Skip to listings Skip to search Skip to filters Skip to app menu
Need help now? Free crisis lines and helplines, worldwide — chapter 02 →
0 results for

Neurological Conditions — Support for Dementia, Alzheimer's, Parkinson's, Epilepsy, Stroke, MS, MND & More

Chapter 8 of 18 in Notbroken's Free Metabolic & Mental Health Help Directory: 213 listings in 14 categories, each carefully checked. Open the full directory of 2299 listings.
213
Listings
14
Categories
8 / 18
Chapter
Latest Edition Always download the most up-to-date version, free, at notbroken.io
Know someone who could benefit? Share this guide with them.
Free to use · No account needed
Last Updated: November 1, 2026 • For Educational Purposes Only • Not Medical Advice • Created by Nathan Leary
Navigation
Contents
08
Neurological Conditions — Support for Dementia, Alzheimer's, Parkinson's, Epilepsy, Stroke, MS, MND & More
213 listings · 14 categories
08
Neurological Conditions — Support for Dementia, Alzheimer's, Parkinson's, Epilepsy, Stroke, MS, MND & More
NEUROLOGICAL CONDITIONS
NEUROLOGICAL CONDITIONS

Neurological Conditions — Support for Dementia, Alzheimer's, Parkinson's, Epilepsy, Stroke, MS, MND & More

In an emergency — the signs of a stroke, a seizure that does not stop, or a sudden, severe headache — call your local emergency number. Free helplines, including national dementia, epilepsy, stroke, MS, Parkinson's, MND and brain-injury lines, are in chapter 02 (Helplines & Crisis Lines), and chapter 04 (Know What To Do) has free guides to the signs of stroke, seizure first aid and the warning signs of dementia. This chapter gathers 213 services and resources for people living with a neurological condition and for their families and carers — dementia and Alzheimer's disease, Parkinson's disease, epilepsy, stroke, multiple sclerosis, motor neurone disease, migraine, brain injury, Huntington's disease and other movement disorders, muscle, nerve and spinal-cord conditions, cerebral palsy, Tourette syndrome, functional neurological disorder, brain tumours and rare conditions: ways to find a neurologist and get a diagnosis, the national charities and their specialist nurses, support groups and online communities, information for people who have just been diagnosed, help for carers, equipment and driving, and research registers. They are run by governments, national health services, universities and long-established charities. Each listing says who it is for, where it works and what it costs, as the organisation states it. Every listing was found on the organisation's own website, checked again independently, and opened a third time before it was added (October 2026). These listings are information, not medical advice — talk to your own doctor about diagnosis and treatment. Each listing links to the organisation's own website, which has its latest details.

Start Here — Finding a Neurologist, Diagnosis & Brain Health Information

Brain Foundation — A–Z of brain disorders with where to find support (Australia)

https://brainfoundation.org.au/disorders/
The page does not state a fee — the directory is open to read on the website. Note: General information only — the site says it is doctor reviewed but does not take the place of advice from a healthcare professional.
What It Does
An A–Z directory of brain disorders, written for people newly diagnosed and their friends and relatives, with basic information reviewed by medical experts and pointers to where to turn for more information and support. Choose a letter or condition to start.
Who It Helps
People in Australia newly diagnosed with a brain disorder, disease or injury, their friends and relatives, and health professionals.
The page does not state a fee — the directory is open to read on the website. Note: General information only — the site says it is doctor reviewed but does not take the place of advice from a healthcare professional.
Copy link

Neurological Foundation — conditions and support organisations for New Zealanders (New Zealand)

https://www.neurological.org.nz/conditions/
The page does not state a fee — the pages are open to read on the website. Note: Covers a selection of conditions, not all 700+. The Foundation funds research and education, so it points you to support organisations for each condition. No fee is stated.
What It Does
Plain-language overviews of neurological conditions that New Zealand researchers focus on — including Alzheimer's and dementia, brain tumours, cerebral palsy, epilepsy, essential tremor, FND, Huntington's, migraine, MND, MS, Parkinson's, stroke and traumatic brain injury — with their symptoms and support organisations. For rare conditions it points to Rare Disorders NZ.
Who It Helps
People in New Zealand living with a neurological condition, and their whānau and friends.
The page does not state a fee — the pages are open to read on the website. Note: Covers a selection of conditions, not all 700+. The Foundation funds research and education, so it points you to support organisations for each condition. No fee is stated.
Copy link

Brain & Spine Foundation Helpline — free nurse helpline for any neurological condition (UK)

https://www.brainandspine.org.uk/support-for-you/helpline/
Free (as the service states: 'It is free to call'). Note: Weekdays 9am–4pm only and closed on bank and public holidays. You can leave a message, but it cannot return calls to numbers that bar withheld or anonymous calls.
What It Does
A national helpline run by neuroscience nurses who answer questions, recommend practical steps and give emotional support to people affected by any neurological condition. Call free on 0808 808 1000, Monday to Friday 9am–4pm, or email; email replies aim to arrive within 3 working days.
Who It Helps
Anyone in the UK living with a neurological condition, or caring for someone who does.
Free (as the service states: 'It is free to call'). Note: Weekdays 9am–4pm only and closed on bank and public holidays. You can leave a message, but it cannot return calls to numbers that bar withheld or anonymous calls.
Copy link

Brain & Spine Foundation — find a neurology or neurosurgery centre near you, online map (UK)

https://www.brainandspine.org.uk/find-a-neurological-service/
The page does not state a fee — the map is open to use on the website. Note: A map of where services are — it does not book appointments or make referrals. It also gives information on private neurologists.
What It Does
An online map of neurology and neurosurgery centres, spinal injury units, and radiosurgery and radiotherapy centres, with a downloadable full list of neurocentres and information on private neurologists. If you need help using the map, the team can be reached on 020 3096 7880.
Who It Helps
People with a neurological condition, and their families, who want to know where specialist neurology and neurosurgery services are located in the UK.
The page does not state a fee — the map is open to use on the website. Note: A map of where services are — it does not book appointments or make referrals. It also gives information on private neurologists.
Copy link

The Neurological Alliance — directory of member charities to find support for your condition (England)

https://www.neural.org.uk/membership/our-members/
The page does not state a fee — the directory is open to use; each charity sets its own terms. Note: The alliance itself works on health and care policy; for advice and support, contact the member charities listed.
What It Does
A directory of the alliance's member organisations — national charities and support groups for conditions from ataxia, brain injury and Batten disease to rare conditions such as CADASIL or cauda equina syndrome — each with a short description and a website link. Browse it to find the charity that supports your condition.
Who It Helps
People in England affected by a neurological condition, and their families and carers, who are looking for a condition-specific charity.
The page does not state a fee — the directory is open to use; each charity sets its own terms. Note: The alliance itself works on health and care policy; for advice and support, contact the member charities listed.
Copy link

NHS inform — brain, nerves and spinal cord conditions A–Z (Scotland)

https://www.nhsinform.scot/illnesses-and-conditions/brain-nerves-and-spinal-cord/
Free to use; no fee is mentioned on the page.
What It Does
NHS inform's section on illnesses and conditions of the nerves and central nervous system, with pages on ataxia, dementia, dystonia, epilepsy, FND, Huntington's disease, MND, MS, multiple system atrophy, myasthenia gravis, Parkinson's, peripheral neuropathy, PSP, stroke and TIA, Tourette's syndrome and more. Pick a condition to read the NHS overview.
Who It Helps
Anyone wanting NHS information on a neurological condition; service and support details are written for people in Scotland.
Free to use; no fee is mentioned on the page.
Copy link

Neurological Alliance of Ireland — list of member charities to find the organisation for your condition (Ireland)

https://www.nai.ie/our-members
The page does not state a fee — the list is open to use; each organisation sets its own terms. Note: The alliance is an advocacy umbrella body; contact the member organisation for your condition. Some member descriptions are old, so check each organisation's own website. No fee is stated.
What It Does
A list of the alliance's member organisations with a short description and website link for each — including Acquired Brain Injury Ireland, The Alzheimer Society of Ireland, Aphasia Ireland, Epilepsy Ireland, FND Ireland, Headway Ireland, the Irish Motor Neurone Disease Association, MS Ireland, Migraine Ireland, Parkinson's Ireland, PSPA Ireland and Spinal Injuries Ireland.
Who It Helps
People in Ireland living with a neurological condition, and their families and carers, looking for a condition-specific organisation.
The page does not state a fee — the list is open to use; each organisation sets its own terms. Note: The alliance is an advocacy umbrella body; contact the member organisation for your condition. Some member descriptions are old, so check each organisation's own website. No fee is stated.
Copy link

BrainHealth.com (American Academy of Neurology) — free information on neurological conditions, caregiving and daily life (United States)

https://www.brainhealth.com/
Free to read (the AAN describes Brain & Life, now BrainHealth.com, as a free resource); the email newsletter sign-up is optional.
What It Does
The American Academy of Neurology's public website (the new home of its Brain & Life resources), with expert-reviewed articles on neurological disorders, caregiving, life with a condition, and finances and insurance, plus a podcast and an 'Ask a Neurologist' section of common questions and answers. Start with 'Disorders & Care' to look up a condition.
Who It Helps
People living with a neurological condition, their family and carers, and anyone wanting to look after their brain health. Run by a US organisation; some articles, such as those on insurance and medical bills, are US-specific.
Free to read (the AAN describes Brain & Life, now BrainHealth.com, as a free resource); the email newsletter sign-up is optional.
Copy link

NINDS (National Institutes of Health) — A–Z index of neurological disorders (United States)

https://www.ninds.nih.gov/health-information/disorders
Free to use; no fee is mentioned on the page. Note: NIH says its websites are changing: existing pages are being redirected to matching pages on the new NIH.gov where possible, so this address may forward you to a new page.
What It Does
The US National Institute of Neurological Disorders and Stroke's A–Z index of neurological disorders, linking to plain-language information pages, a Glossary of Neurological Terms and a Spanish-language section (Trastornos neurológicos en español). Search the index or browse by letter to find a condition.
Who It Helps
Anyone who wants reliable information on a neurological condition — people newly diagnosed, families, carers and students. US government information, open to read anywhere.
Free to use; no fee is mentioned on the page. Note: NIH says its websites are changing: existing pages are being redirected to matching pages on the new NIH.gov where possible, so this address may forward you to a new page.
Copy link

EFNA 'Stronger Connected' map — find a neurology patient organisation by country and condition (Europe)

https://www.efna.net/european-neurology-patient-organisations/
The page does not state a fee — the map is open to use on the website. Note: Entries give each organisation's contact details as recorded by EFNA; confirm on the organisation's own website before relying on them.
What It Does
An interactive map and searchable listing of neurology patient organisations across Europe, including Ireland and the UK. Filter by country and by condition — such as ataxia, brain tumour, dystonia, epilepsy, headache, Huntington's, MS, myasthenia gravis, Parkinson's, stroke or Tourette's — to see each organisation's website and email.
Who It Helps
People living with a neurological condition in Europe, and their families, looking for a patient organisation in their own country.
The page does not state a fee — the map is open to use on the website. Note: Entries give each organisation's contact details as recorded by EFNA; confirm on the organisation's own website before relying on them.
Copy link

Dementia & Alzheimer's Disease

Dementia Australia — post-diagnostic support: six free sessions after a dementia or MCI diagnosis (Australia)

https://www.dementia.org.au/get-support/post-diagnostic-support
Free (as the service states).
What It Does
One Dementia Australia staff member works with you over six sessions, by phone or video, to help you understand dementia, plan support services and networks, and prepare for changes; they can also refer you on to My Aged Care or the NDIS. Sessions can be spread over six weeks or up to 12 months. To start, contact the National Dementia Helpline on 1800 100 500 or its live chat.
Who It Helps
People of any age diagnosed with dementia, or assessed with mild cognitive impairment, anywhere in Australia; the support is also available to their family and carers.
Free (as the service states).
Copy link

Dementia Australia — free dementia counselling for individuals, couples and families (Australia)

https://www.dementia.org.au/get-support/counselling
Free (as the service states). Note: The program is up to six sessions; which format you get depends on your location and counsellor availability, and needs beyond the dementia focus (such as relationship counselling) may be referred elsewhere.
What It Does
Professional counsellors help with emotional reactions, family and culture, living arrangements, symptoms and changed behaviours, and with planning for the future, at any stage of dementia. Sessions are face-to-face, by phone or by video. To ask for counselling, call the National Dementia Helpline on 1800 100 500 at any time; an adviser will talk through your needs.
Who It Helps
People living with dementia, and family members, partners and carers of someone with dementia, in Australia.
Free (as the service states). Note: The program is up to six sessions; which format you get depends on your location and counsellor availability, and needs beyond the dementia focus (such as relationship counselling) may be referred elsewhere.
Copy link

Dementia Australia — Connecting Peers: one-to-one support from a volunteer with lived experience (Australia)

https://www.dementia.org.au/get-support/connecting-peers/get-peer-support
Free, with no obligation (as the service states). Note: Matching can involve a waiting list; a peer connection is normally up to 6 calls over 6 months, and you can reapply after 3 months.
What It Does
You register online and are matched with a volunteer Peer Leader who has been through something similar: a person living with dementia is matched with another person with dementia, and a carer with a carer. You talk by phone or Zoom, usually up to six calls over six months, and can ask for a different match or opt out at any time.
Who It Helps
Anyone in Australia who lives with dementia or cares for someone living with dementia.
Free, with no obligation (as the service states). Note: Matching can involve a waiting list; a peer connection is normally up to 6 calls over 6 months, and you can reapply after 3 months.
Copy link

Dementia Australia — Mild Cognitive Impairment: Thinking Ahead, a free five-week small-group program (Australia)

https://www.dementia.org.au/get-support/mild-cognitive-impairment-thinking-ahead
Free (as the service states). Note: Runs to a schedule; whether you can attend face-to-face or online depends on your location.
What It Does
Five weekly sessions of two and a half hours, in a group of up to 10 people living with MCI, led by Dementia Australia staff, covering what MCI is, practical tips for managing changes, brain health, services that can help and staying independent. There is an individual session first that a family member or support person can join. Register from the online schedule or call 1800 100 500.
Who It Helps
People living with mild cognitive impairment (MCI) in Australia; a family member or support person can attend the first individual session.
Free (as the service states). Note: Runs to a schedule; whether you can attend face-to-face or online depends on your location.
Copy link

Dementia Australia — family engagement counselling for families living with young onset dementia (Australia)

https://www.dementia.org.au/get-support/family-engagement-counselling-young-onset-dementia
Free (as the service states).
What It Does
Specialist counsellors bring family members together to talk through the practical and emotional effects of dementia, changing roles and big decisions such as continuing work or school, and help the family reach supports such as respite. The person with dementia is at the centre but can choose not to take part. Contact the National Dementia Helpline on 1800 100 500 or use the enquiry form.
Who It Helps
Family groups where someone lives with dementia, especially young onset dementia (diagnosed under 65), anywhere in Australia; all family members can take part, including children under 18.
Free (as the service states).
Copy link

Dementia Support Australia — DBMAS: free 24/7 help when changed behaviours affect the care of a person with dementia (Australia)

https://www.dementia.com.au/dbmas
Free (as the service states: 'funded by the Australian Government Department of Health and is a free service').
What It Does
Consultants assess the person with dementia and their surroundings by phone or in person, work with carers, GPs and care staff, and give personalised, non-drug strategies, written recommendations and ongoing support. It helps at home, in respite, in residential aged care and in hospital. Call the 24-hour line on 1800 699 799, use the referral form or live chat.
Who It Helps
Family carers and care staff of a person who has, or is suspected of having, dementia and whose behaviours are affecting their care, anywhere in Australia; no age limit. The person must agree (or their responsible person).
Free (as the service states: 'funded by the Australian Government Department of Health and is a free service').
Copy link

healthdirect — dementia information hub: types, diagnosis, driving and caring at home (Australia)

https://www.healthdirect.gov.au/conditions/dementia
Free to use; no fee is mentioned on the page.
What It Does
The government-funded health information service's dementia section, with plain-language pages on Alzheimer's disease, vascular, Lewy body, frontotemporal and younger onset dementia, tests used in diagnosis, living well after diagnosis, dementia and driving, caring for someone at home, and dementia in Aboriginal and Torres Strait Islander people. It advises seeing your doctor if you notice symptoms.
Who It Helps
Anyone in Australia worried about memory changes, living with dementia, or caring for someone with dementia.
Free to use; no fee is mentioned on the page.
Copy link

Cognitive, Dementia and Memory Service (CDAMS) — public memory clinics for assessment and diagnosis (Victoria, Australia)

https://www.betterhealth.vic.gov.au/health/serviceprofiles/cognitive-dementia-and-memory-service
The service 'may be partly or fully covered by Medicare'; contact the clinic before you attend if you want to know about cost (as the page states). Note: Victoria only. The page does not list clinics; the Better Health Channel points to the Australian Dementia Network map to find a public or private clinic near you.
What It Does
CDAMS clinics are specialist multidisciplinary services that assess memory loss or changes in thinking, give a diagnosis, explain treatment options, and offer education, support, help planning ahead and links to other services. You can be referred by your GP or community health centre, or contact a CDAMS clinic yourself — a doctor's referral is not required.
Who It Helps
Anyone in Victoria experiencing changes to their memory or thinking, and the people who support them. Clinics are across metropolitan Melbourne and regional Victoria.
The service 'may be partly or fully covered by Medicare'; contact the clinic before you attend if you want to know about cost (as the page states). Note: Victoria only. The page does not list clinics; the Better Health Channel points to the Australian Dementia Network map to find a public or private clinic near you.
Copy link

Forward with Dementia — guidance for the first year after a dementia diagnosis, incl. young onset (Australia)

https://forwardwithdementia.au/
Free to read online (open web pages; no fee is mentioned). Note: An information website, not a support service — for personal help use the National Dementia Helpline or your doctor.
What It Does
An Australian information website, co-created with people living with dementia and carers, that helps you through the first year after diagnosis: understanding the diagnosis, coming to terms with it, managing changes, wellbeing, and making plans and decisions. It has separate sections for people with dementia, carers, families living with young onset dementia and health professionals.
Who It Helps
People recently diagnosed with dementia in Australia, their carers and families (including young onset dementia), and the health professionals who support them.
Free to read online (open web pages; no fee is mentioned). Note: An information website, not a support service — for personal help use the National Dementia Helpline or your doctor.
Copy link

Health New Zealand | Te Whatu Ora — dementia (mate wareware): symptoms, diagnosis, planning ahead and support (New Zealand)

https://www.healthnz.govt.nz/health-topics/conditions-treatments/brain-and-nerves/dementia
Free to use; no fee is mentioned on the page.
What It Does
The national health service's plain-language page on dementia: common symptoms and types, why to see a healthcare provider if you are worried about memory, living with dementia, your rights, planning ahead with an Enduring Power of Attorney and advance care plan, and caring for someone. It links to Alzheimers New Zealand and Dementia New Zealand for local support.
Who It Helps
People in New Zealand worried about memory changes, living with dementia, and their whānau and carers.
Free to use; no fee is mentioned on the page.
Copy link

Dementia New Zealand — find your local dementia support organisation (New Zealand)

https://dementia.nz/find-local-help/
Free (the site describes 'Free support, education, and advocacy for New Zealanders affected by dementia'). Note: In Eastern Bay of Plenty, Gisborne, Manawatū, Taranaki, Wairarapa, Whanganui, Marlborough, Nelson/Tasman, Otago, South Canterbury and Southland, support comes from a separate Alzheimers organisation.
What It Does
Choose the regional organisation that covers where you live and contact it directly for support, education and advice for people living with dementia (mate wareware), their care partners and whānau. The network covers Northland, Auckland, Waikato, Lakes, Tauranga/Western Bay of Plenty, Hawke's Bay, Wellington and Canterbury/West Coast; the page links the Alzheimers organisations for other regions.
Who It Helps
People living with dementia, their care partners and whānau anywhere in New Zealand (via the local organisation for their region).
Free (the site describes 'Free support, education, and advocacy for New Zealanders affected by dementia'). Note: In Eastern Bay of Plenty, Gisborne, Manawatū, Taranaki, Wairarapa, Whanganui, Marlborough, Nelson/Tasman, Otago, South Canterbury and Southland, support comes from a separate Alzheimers organisation.
Copy link

Alzheimer's Society Dementia Support Forum — free online community, open day or night (UK)

https://forum.alzheimers.org.uk/
Free (as Alzheimer's Society states: 'free, open day or night'). Note: Peer support, not professional advice; moderators do not check every post before it appears. In an emergency call 999.
What It Does
A moderated peer-to-peer forum where people affected by dementia share experiences and support one another, with sections for people with dementia, partners and carers, younger people with dementia, LGBT+ people, memory concerns and seeking a diagnosis, the different stages, end of life care and bereavement. You can read posts, and register free to post.
Who It Helps
Anyone affected by dementia — people living with it, partners, family members and carers.
Free (as Alzheimer's Society states: 'free, open day or night'). Note: Peer support, not professional advice; moderators do not check every post before it appears. In an emergency call 999.
Copy link

NHS website — dementia guide for people with dementia, families and friends (UK)

https://www.nhs.uk/conditions/dementia/
Free to use; no fee is mentioned on the page.
What It Does
The NHS website's dementia guide, in four parts: about dementia (causes, prevention and treatment), symptoms and diagnosis (including what to do after a diagnosis), living with dementia (including looking after someone), and care and support (care homes, NHS care, social services, financial and legal issues). You can also sign up for NHS dementia emails.
Who It Helps
People with dementia, their families and friends, and anyone worried about symptoms.
Free to use; no fee is mentioned on the page.
Copy link

Dementia UK — book a free 45-minute phone or video appointment with an Admiral Nurse (UK)

https://www.dementiauk.org/information-and-support/how-we-can-support-you/book-a-virtual-appointment/
Free (as the service states: 'Appointments are free, confidential'). Note: Demand is high and appointments are often booked two to three weeks ahead; for help sooner, the page points to the Admiral Nurse Dementia Helpline.
What It Does
Book a 45-minute appointment with a dementia specialist Admiral Nurse in Dementia UK's virtual clinics, by phone or video, for support on diagnosis, symptoms and changes in behaviour, emotional support, hospital stays and employment. Appointments run Monday to Wednesday 10am–7pm and Thursday to Saturday 10am–3pm; evening slots are video only. You can book for someone else if they are happy to share their details.
Who It Helps
Carers of someone with dementia, and people living with a diagnosis of dementia.
Free (as the service states: 'Appointments are free, confidential'). Note: Demand is high and appointments are often booked two to three weeks ahead; for help sooner, the page points to the Admiral Nurse Dementia Helpline.
Copy link

Dementia UK — 'Dementia: what next?' free online sessions after a diagnosis (UK)

https://www.dementiauk.org/information-and-support/how-we-can-support-you/dementia-what-next/
Free (as the service states).
What It Does
A free series of three online sessions on Zoom, hosted by Admiral Nurses: what dementia is (types, symptoms, wellbeing, medication); financial and legal issues (mental capacity, lasting power of attorney, benefits, paying for care, your rights); and planning for the future. Sessions repeat every month, mornings on Fridays and evenings on Tuesdays; register for any or all on the page.
Who It Helps
People who have recently been diagnosed with dementia, and their families.
Free (as the service states).
Copy link

GOV.UK (DVLA) — dementia and driving: you must tell DVLA, and how to report it (UK)

https://www.gov.uk/dementia-and-driving
Free to use; no fee is mentioned on the page. Note: You can be fined up to £1,000 for not telling DVLA about a condition that affects driving; there is a different process for other cognitive problems.
What It Does
The official DVLA page on dementia and driving. If you have dementia you must tell DVLA: car or motorcycle licence holders can report online or send form CG1; bus, coach or lorry licence holders must stop driving straight away and send form CG1. It links to related pages on giving up your licence voluntarily and reapplying after a health condition.
Who It Helps
Anyone with a dementia diagnosis who holds a driving licence issued by DVLA, and families helping them.
Free to use; no fee is mentioned on the page. Note: You can be fined up to £1,000 for not telling DVLA about a condition that affects driving; there is a different process for other cognitive problems.
Copy link

Alzheimer Scotland — post diagnostic support: a year with a dementia Link Worker (Scotland)

https://www.alzscot.org/about-us/care/post-diagnostic-support/
The page does not state a fee — it says 'The Scottish Government has guaranteed a year's post diagnostic support for everyone diagnosed with dementia'; ask when you contact them. Note: Scotland only. In some areas this support is given by NHS staff rather than Alzheimer Scotland.
What It Does
After a dementia diagnosis, a Post Diagnostic Support Link Worker is allocated to you for at least a year. With your consent they visit, find out what matters to you, and help you understand and manage symptoms, keep up community connections, meet others with dementia and plan for future decisions and support. Ask your doctor to refer you; the page lists Alzheimer Scotland Link Workers by area.
Who It Helps
Everyone in Scotland who has been diagnosed with dementia.
The page does not state a fee — it says 'The Scottish Government has guaranteed a year's post diagnostic support for everyone diagnosed with dementia'; ask when you contact them. Note: Scotland only. In some areas this support is given by NHS staff rather than Alzheimer Scotland.
Copy link

Dementia NI — membership and peer-support Empowerment Groups for people with a dementia diagnosis (Northern Ireland)

https://www.dementiani.org/what-we-do/become-a-member
Free (as the service states: 'membership of Dementia NI is completely free'). Note: Northern Ireland only; for people with a formal diagnosis in the earlier stages who can manage continence care independently.
What It Does
Membership lets you join a local Empowerment Group to meet and support other people with dementia, have one-to-one peer support from an established member through 'In The Same Boat', join a Buddy Scheme and activities such as reading groups and choirs, and help shape services and research. You, a family member or a health professional can enquire; proof of diagnosis is needed.
Who It Helps
People living in Northern Ireland with a formal diagnosis of dementia, generally in the earlier stages and comfortable talking about their diagnosis.
Free (as the service states: 'membership of Dementia NI is completely free'). Note: Northern Ireland only; for people with a formal diagnosis in the earlier stages who can manage continence care independently.
Copy link

The Alzheimer Society of Ireland — find dementia services and support in your county (Ireland)

https://alzheimer.ie/get-support/our-services-and-support/
Varies by service: Dementia Adviser entries state 'This service is free and confidential'; the overview does not state fees for other ASI services such as home care, day care or respite, and some non-ASI activities on county pages charge (e.g. €5 a session) — ask the local service. Note: Which services are available, and how to access them, differs from county to county; some services need a referral form with confirmation of a dementia diagnosis from a GP or consultant.
What It Does
Choose your county or a service type to see local services, with contact details, how to access them and referral forms: Dementia Advisers, home care, day care, activity clubs for people with young onset and early-stage dementia, support groups, Alzheimer Cafés, Cognitive Stimulation Therapy, respite, family carer training and more. County pages also list some other organisations' local supports.
Who It Helps
People living with dementia, their families and carers in the Republic of Ireland.
Varies by service: Dementia Adviser entries state 'This service is free and confidential'; the overview does not state fees for other ASI services such as home care, day care or respite, and some non-ASI activities on county pages charge (e.g. €5 a session) — ask the local service. Note: Which services are available, and how to access them, differs from county to county; some services need a referral form with confirmation of a dementia diagnosis from a GP or consultant.
Copy link

National Institute on Aging — ADEAR Center: free information and referrals on Alzheimer's and related dementias (United States)

https://www.nia.nih.gov/about/alzheimers-and-dementia/about-adear-center
Free to use; no fee is mentioned on the page, and its articles and publications are described as free. Note: A US federal service; the phone line is open weekdays 8:30am–5pm Eastern Time only.
What It Does
The federal Alzheimer's and related Dementias Education and Referral (ADEAR) Center answers your questions about dementia, sends free articles and publications on symptoms, diagnosis, treatment, caregiving and home safety, refers you to local support services and research centers, and gives clinical trials information. Call 800-438-4380 (English and Spanish, 8:30am–5pm ET, Monday–Friday) or email adear@nia.nih.gov.
Who It Helps
People living with Alzheimer's and related dementias, their families and caregivers, health professionals and the general public.
Free to use; no fee is mentioned on the page, and its articles and publications are described as free. Note: A US federal service; the phone line is open weekdays 8:30am–5pm Eastern Time only.
Copy link

AFTD HelpLine — social workers answering questions about frontotemporal degeneration (FTD) (United States)

https://www.theaftd.org/aftd-helpline/
The HelpLine number is toll-free (as the page states); no fee is mentioned. Note: Staffed weekdays 9am–5pm Eastern Time only; the page does not say whether callers outside the United States can use the toll-free number.
What It Does
Social workers at the Association for Frontotemporal Degeneration answer questions about FTD and its subtypes, give guidance on managing a new diagnosis, help connect you to resources and support, and offer emotional support. Call toll-free 1-866-507-7222 (Monday–Friday, 9am–5pm ET), send an email, or schedule a call online from the page.
Who It Helps
Anyone with questions about FTD; the HelpLine's enquiry form lists people with FTD, primary care partners, family members and healthcare professionals.
The HelpLine number is toll-free (as the page states); no fee is mentioned. Note: Staffed weekdays 9am–5pm Eastern Time only; the page does not say whether callers outside the United States can use the toll-free number.
Copy link

Lewy Body Dementia Association — Lewy Line: support from the LBDA team by phone or email (United States)

https://lbda.org/lbda-lewy-line
The page does not state a fee — ask when you contact them. Note: US only (LBDA cannot return calls outside the United States); a leave-a-message service, and it does not refer to care homes or home care agencies or promote doctors.
What It Does
LBDA's Support Services team and trained volunteers offer listening and emotional support, referrals to LBDA programs and local support groups, and help finding education and community resources. Call the Lewy Line on (800) 539-9767 and leave a message — they aim to call back within 3 business days — or contact them by email or online.
Who It Helps
People with symptoms or a diagnosis of Lewy body dementia, and current and former care partners and family members, in the United States.
The page does not state a fee — ask when you contact them. Note: US only (LBDA cannot return calls outside the United States); a leave-a-message service, and it does not refer to care homes or home care agencies or promote doctors.
Copy link

ALZConnected — the Alzheimer's Association's free online community for people with dementia and caregivers (United States)

https://alzconnected.org/
Free (as the service states: 'a free online community'). Note: Peer discussion, not professional advice; for expert help the page points to the Alzheimer's Association 24/7 Helpline.
What It Does
A free online community where people living with dementia, caregivers and others affected can post questions, share answers and support, and create public or private groups on specific topics. There are separate discussion areas for people living with dementia and for caregivers, and discussions in Spanish. Register to post.
Who It Helps
People living with Alzheimer's or another dementia, their caregivers and others affected by the disease.
Free (as the service states: 'a free online community'). Note: Peer discussion, not professional advice; for expert help the page points to the Alzheimer's Association 24/7 Helpline.
Copy link

Alzheimer Society — First Link: connection to your area Alzheimer Society after a diagnosis (Canada)

https://alzheimer.ca/en/help-support/programs-services/first-link
The page does not state a fee — ask when you contact them. Note: Delivered by each provincial or territorial Alzheimer Society, so services and contact routes differ; the page lists no separate number for Nunavut.
What It Does
First Link connects you to dementia-focused health services, support and information near you: one-on-one or group support, local health-care providers and community services, meeting others in similar circumstances, and help planning for the future. Phone your provincial or territorial Alzheimer Society from the list on the page; health-care providers can also refer people who are newly diagnosed.
Who It Helps
People diagnosed with dementia, people caring for someone with dementia, and anyone wanting to learn about dementia, across Canada.
The page does not state a fee — ask when you contact them. Note: Delivered by each provincial or territorial Alzheimer Society, so services and contact routes differ; the page lists no separate number for Nunavut.
Copy link

ABRAz (Brazilian Alzheimer's Association) — regional units and family carer support groups (Brazil)

https://abraz.org.br/sobre/
The page does not state a fee; it says ABRAz is funded by contributions from users, donations and private-sector partnerships — ask your regional unit. Note: Portuguese only; groups and activities differ by regional unit.
What It Does
ABRAz gives information and guidance on Alzheimer's disease and other dementias through 21 regional units across Brazil, and runs about 100 support groups where families and carers share experiences and learn about the disease. It also runs cognitive stimulation groups for older people with dementia, and in some places exercise and social groups. The site is in Portuguese; see 'Regionais' for your unit.
Who It Helps
People living with Alzheimer's disease or another dementia, and their families and carers, in Brazil.
The page does not state a fee; it says ABRAz is funded by contributions from users, donations and private-sector partnerships — ask your regional unit. Note: Portuguese only; groups and activities differ by regional unit.
Copy link

ADASA (formerly Alzheimer's South Africa) — counselling, family support and monthly support groups (South Africa)

https://www.adasa.org.za/about-us/
The page does not state a fee for support or counselling — ask when you contact them. Note: Services differ by region (not all regions offer screening); the page does not state fees for support or training, and printed leaflets carry handling and postage fees.
What It Does
ADASA offers individual psychosocial support, family support and counselling for people living with dementia and their families, face to face or by Zoom, WhatsApp video or phone, monthly support groups in all regions, and training workshops for family carers and care workers. Call the national helpline on 0860 102 681 (local call rate) or email info@adasa.org.za; requests go to your local region.
Who It Helps
People living with dementia and their families and carers in South Africa; ADASA works in all nine provinces (North West is supported by Gauteng).
The page does not state a fee for support or counselling — ask when you contact them. Note: Services differ by region (not all regions offer screening); the page does not state fees for support or training, and printed leaflets carry handling and postage fees.
Copy link

Alzheimer's Disease International — find the Alzheimer or dementia association in your country (Worldwide)

https://www.alzint.org/about/find-local-support/
Free to use; no fee is mentioned on the page.
What It Does
ADI's member associations, and associations on its Membership Development Programme, give information and support and can tell you about services in your area. Use 'Find your local association' to reach the one in your country; if none is listed, the page suggests trying a neighbouring country.
Who It Helps
People living with dementia, families and carers in any country who want to find their national dementia association.
Free to use; no fee is mentioned on the page.
Copy link

Parkinson's Disease

Parkinson's Australia — national Parkinson's infoline that connects you to your state or territory Parkinson's organisation (Australia)

https://www.parkinsons.org.au/about-us/what-we-do/
The page does not state a fee — ask when you contact them. Note: Services are run by independent state organisations and vary by state.
What It Does
Call the national infoline on 1800 644 189 and you are connected with the independent Parkinson's support organisation in your state or territory. Depending on the state, they can help with local or online peer support groups, finding a movement disorder specialist or allied health professional, Parkinson's nurse specialist services, exercise groups, education events, and My Aged Care and NDIS questions.
Who It Helps
People living with Parkinson's anywhere in Australia, and their families and carers. Each state organisation is independent, so services vary from state to state.
The page does not state a fee — ask when you contact them. Note: Services are run by independent state organisations and vary by state.
Copy link

Fight Parkinson's Community Learning Hub — free on-demand online courses on living with Parkinson's (Australia)

https://www.fightparkinsons.org.au/understand-parkinsons/community-learning-hub/
Free (as the page states: 'free online, on-demand courses for the Parkinson’s community').
What It Does
Free online courses you can take in your own time and at your own pace. Topics include an introduction to Parkinson's, recently diagnosed, exercise, falls prevention, the NDIS, carers, women and Parkinson's, LGBTIQA+ and Parkinson's, palliative care, sex and intimacy, sleep and communication changes. Sign up for the learning hub from the page (it gives the access code), then choose a course.
Who It Helps
People living with Parkinson's, their family, friends and carers. The courses are online, so anyone can use them; the NDIS course explains the scheme for people aged under 65 who may be eligible.
Free (as the page states: 'free online, on-demand courses for the Parkinson’s community').
Copy link

Parkinson's NSW — InfoLine, free counselling, 70+ support groups and regional Parkinson's nurses (New South Wales, Australia)

https://www.parkinsonsnsw.org.au/parkinsons-nsw-services/
Counselling is free ('This service is provided at no cost to the user'); the services page does not state fees for other services — ask when you contact them. Note: NSW only. The no-cost statement is on a counselling page last updated in 2021, and fees for the InfoLine, groups and nurses are not stated — confirm when you call.
What It Does
Call the InfoLine on 1800 727 567, staffed by health and allied health professionals, for information, advice and help finding local services. Through the InfoLine you can book confidential counselling, find one of more than 70 support groups across NSW, and speak with the NDIS Advocate if you are under 65. Trained Parkinson's specialist nurses work in some regional areas.
Who It Helps
People living with Parkinson's in New South Wales and their partners, families and carers. Counselling is by phone or video anywhere in NSW, or in person in metropolitan Sydney.
Counselling is free ('This service is provided at no cost to the user'); the services page does not state fees for other services — ask when you contact them. Note: NSW only. The no-cost statement is on a counselling page last updated in 2021, and fees for the InfoLine, groups and nurses are not stated — confirm when you call.
Copy link

Parkinson's Queensland — 33 support groups across metropolitan and rural Queensland (Queensland, Australia)

https://parkinsonsqld.org.au/support-groups/
The page does not state a fee — ask when you contact them. Note: Queensland only; groups use a self-help model and are not therapy groups.
What It Does
Informal, volunteer-coordinated support groups where people with Parkinson's, carers, friends and family meet, share practical tips and hear guest speakers such as occupational therapists, social workers and doctors. Use the support group map on the website, phone 1800 644 189 or email pqi@parkinsonsqld.org.au to find your nearest group.
Who It Helps
People living with Parkinson's in Queensland, and their carers, friends and family members; new members are welcome.
The page does not state a fee — ask when you contact them. Note: Queensland only; groups use a self-help model and are not therapy groups.
Copy link

Parkinson's WA Nurse Specialists — free home visits from Parkinson's nurse specialists in the metropolitan area and South West (Western Australia)

https://www.parkinsonswa.org.au/nurse-specialists
Free — the service is 'funded by the Department of Health WA and charitable trusts with no charge to clients'. Note: The page says the team covers the metropolitan area and the South West of Western Australia; ask whether home visits reach your area.
What It Does
Parkinson's nurse specialists visit people with Parkinson's at home to help manage the condition, working closely with their GPs and neurologists and referring on to services such as physiotherapy, occupational therapy and care support workers. The team covers the metropolitan area and the South West. To arrange a visit, call (08) 6457 7371.
Who It Helps
People living with Parkinson's in the metropolitan area and South West of Western Australia.
Free — the service is 'funded by the Department of Health WA and charitable trusts with no charge to clients'. Note: The page says the team covers the metropolitan area and the South West of Western Australia; ask whether home visits reach your area.
Copy link

Parkinson's New Zealand — Parkinson's Educators: home visits, support groups and newly diagnosed seminars (New Zealand)

https://www.parkinsons.org.nz/get-support/meet-a-parkinsons-educator
The page does not state a fee — ask when you contact them. Note: You first complete a referral form or call; not all seminars run in every region.
What It Does
A Parkinson's Educator visits you at home (or by phone or video if there is no educator in your region), answers questions about medication, treatment and support, makes a plan with you and follows up each year. Educators run support groups and seminars, including a course for people diagnosed in the last two years, and can refer you to other health professionals. Complete the referral form or call 0800 473 4636.
Who It Helps
People diagnosed with Parkinson's or Parkinsonism, including Parkinson's Plus conditions, in Aotearoa New Zealand, and their whānau and carers.
The page does not state a fee — ask when you contact them. Note: You first complete a referral form or call; not all seminars run in every region.
Copy link

Parkinson's UK groups — over 475 volunteer-led local groups, online groups and a local support finder (UK)

https://www.parkinsons.org.uk/community/groups
The page does not state a fee — ask when you contact them. Note: Groups are run by volunteers, so what is on offer varies by area.
What It Does
Over 475 volunteer-led groups across the UK offer local support, informal meetings, talks from invited speakers such as healthcare professionals, and social activities. There are also online groups and WhatsApp communities, and groups for younger people. Search by postcode or town on the local support finder to find groups, advisers and activities near you.
Who It Helps
Anyone with a connection to Parkinson's in the UK — people with Parkinson's, their carers and families.
The page does not state a fee — ask when you contact them. Note: Groups are run by volunteers, so what is on offer varies by area.
Copy link

Parkinson's UK First Steps — online programme for people recently diagnosed with Parkinson's and those close to them (UK)

https://www.parkinsons.org.uk/support/newly-diagnosed/services/first-steps
Free — the Eventbrite booking pages linked from the programme page list places as 'Free'. Note: You must be able to attend all three weekly sessions, and you need a device with a webcam and a reliable internet connection.
What It Does
Three weekly 2.5-hour Zoom sessions in a small group of people recently diagnosed, hosted by volunteers who have Parkinson's. It covers the healthcare professionals who can help, information and support available, physical activity and mental health support. A family member or friend joining you needs their own place. Courses run throughout the year; contact the First Steps team on 020 7963 9381.
Who It Helps
People in the UK recently diagnosed with Parkinson's, and their family, friends and supporters. You need a device with a webcam and a reliable internet connection.
Free — the Eventbrite booking pages linked from the programme page list places as 'Free'. Note: You must be able to attend all three weekly sessions, and you need a device with a webcam and a reliable internet connection.
Copy link

Parkinson's UK online forum — moderated community for anyone affected by Parkinson's (UK)

https://forum.parkinsons.org.uk/
The page does not state a fee — ask when you contact them. Note: For adults over 18 only; posts come from other members.
What It Does
An online forum run by Parkinson's UK where people with Parkinson's, families, friends and carers share experiences and support each other, with sections on symptoms and treatments, newly diagnosed, carers, daily life, work and benefits, young onset Parkinson's and research. Moderators check the forum regularly against its guidelines. Sign up to post.
Who It Helps
Anyone affected by Parkinson's who is over 18 — people with Parkinson's, families, friends and carers.
The page does not state a fee — ask when you contact them. Note: For adults over 18 only; posts come from other members.
Copy link

PSPA — free Helpline, care navigators, support groups and grants for people affected by PSP and CBD (UK)

https://www.pspassociation.org.uk/information-and-support/pspa-support-services/
Free (as the page states: 'Our free, confidential support services are for everyone affected by PSP & CBD across the UK').
What It Does
PSPA's Helpline and Care Navigator team offer emotional support, practical information and signposting to services. There are online and in-person regional support groups in England, Scotland and Wales, a befriending volunteer service, voice banking information and Support Grants of up to £300 a year. Call 0300 0110 122 or email helpline@pspassociation.org.uk.
Who It Helps
Anyone in the UK affected by progressive supranuclear palsy (PSP) or corticobasal degeneration (CBD) — people diagnosed, carers, family members and the professionals involved.
Free (as the page states: 'Our free, confidential support services are for everyone affected by PSP & CBD across the UK').
Copy link

MSA Trust — MSA Health Care Specialists for people affected by multiple system atrophy (UK and Ireland)

https://www.msatrust.org.uk/support/support-services/msa-health-care-specialists/
Free — the Trust's home page says 'We provide free services for people living with MSA'.
What It Does
A team of MSA Health Care Specialists, each covering a region, supports people affected by MSA across the UK and Ireland and works closely with NHS and HSE professionals. Select your area on the map to find your local specialist, or call 0333 323 4591 (Monday to Thursday 9am–5pm, Friday 9am–4pm) or email support@msatrust.org.uk. The Trust also has social welfare specialists and support groups.
Who It Helps
People affected by multiple system atrophy (MSA) in the UK and Ireland — people living with MSA, their carers, friends and family.
Free — the Trust's home page says 'We provide free services for people living with MSA'.
Copy link

Parkinson Society British Columbia — free counselling and healthcare navigation for people affected by Parkinson's (British Columbia, Canada)

https://parkinson.bc.ca/resources-support/services/counselling-healthcare-navigation
Free — offered 'free of charge to individuals and families affected by Parkinson’s disease in BC'. Note: BC only, short-term and non-crisis; there is a waitlist of about 3–4 weeks after the initial consultation.
What It Does
A social worker and clinical counsellor offer short-term therapy for issues such as anxiety, depression and grief, education sessions and resources, and help navigating the healthcare system — for example advocacy, long-term care planning and disability benefit applications. A staff member first assesses your needs. Call 1-800-668-3330 or email info@parkinson.bc.ca.
Who It Helps
People living with Parkinson's in British Columbia and their families.
Free — offered 'free of charge to individuals and families affected by Parkinson’s disease in BC'. Note: BC only, short-term and non-crisis; there is a waitlist of about 3–4 weeks after the initial consultation.
Copy link

Parkinson's Ireland — freephone helpline with callbacks from Parkinson's nurse specialists and a dietician, plus free counselling (Ireland)

https://www.parkinsons.ie/our-services/nurse-dietician/
Free — the home page describes 'our freephone Parkinson’s nurse helpline', and the counselling service 'is provided free of charge'. Note: Not an emergency line — for urgent medical matters contact your GP, consultant or A&E; nurses cannot advise on specific medication queries.
What It Does
Call 1800 359 359 (Monday to Friday, 9am–5pm) and the office manager books a callback from one of two Parkinson's nurse specialists — about a new diagnosis, medication, symptom changes, exercise and more — or from the part-time dietician. They aim to call back within one working day. The helpline can also refer you or your care partner to free counselling by phone or video.
Who It Helps
People with Parkinson's in Ireland, their loved ones and care partners.
Free — the home page describes 'our freephone Parkinson’s nurse helpline', and the counselling service 'is provided free of charge'. Note: Not an emergency line — for urgent medical matters contact your GP, consultant or A&E; nurses cannot advise on specific medication queries.
Copy link

American Parkinson Disease Association — local chapters, Information & Referral Centers, support groups and exercise classes (United States)

https://www.apdaparkinson.org/community/
The page does not state a fee — ask when you contact them. Note: What is available depends on your local chapter; the page does not state fees — ask when you contact them.
What It Does
APDA's nationwide network of Chapters and Information & Referral (I&R) Centers delivers education, support and patient services locally. Use the state or ZIP code finder to find a support group or exercise class near you, get resources for care partners, or contact local APDA staff. Virtual exercise classes and education programs are open wherever you live.
Who It Helps
People living with Parkinson's in the United States and their care partners and families; if your state is not listed, APDA says it can still help.
The page does not state a fee — ask when you contact them. Note: What is available depends on your local chapter; the page does not state fees — ask when you contact them.
Copy link

Parkinson's Foundation Hospital Safety Guide — free kit with medication forms and alert cards for hospital stays (United States)

https://www.parkinson.org/resources-support/hospital-safety-guide
Free — 'available to everyone in the Parkinson’s community at no cost to order or download'. Note: Printed copies are shipped only within the US; people outside the US can download and print it.
What It Does
A guide to help people with Parkinson's and care partners prepare for planned or unplanned hospital stays. It includes a medical alert wallet card, a medication form to keep updated, a summary to share with hospital staff, a letter for your Parkinson's care provider to sign and a form for surgical treatments. Order a printed copy (US only) or download and print it.
Who It Helps
People with Parkinson's and their care partners. Printed guides are shipped only within the US; people elsewhere can download it.
Free — 'available to everyone in the Parkinson’s community at no cost to order or download'. Note: Printed copies are shipped only within the US; people outside the US can download and print it.
Copy link

Parkinson's Foundation Global Care Network — find a designated Center of Excellence for expert Parkinson's care (United States and worldwide)

https://www.parkinson.org/living-with-parkinsons/finding-care/global-care-network
No fee is mentioned for using the finder; the page does not state what care at the centres costs — ask each centre about fees, referral and insurance cover. Note: The centres are clinical services, typically at academic medical centres; the page does not state costs, so ask each centre about fees, referral and insurance cover.
What It Does
Find one of 59 Parkinson's Foundation Centers of Excellence (46 in the US and 13 in other countries), usually at academic medical centres, where a movement disorders neurologist leads a team of health professionals. Centres must meet care, research, training and education criteria, including newly diagnosed programmes and access to mental health, support group and exercise programmes.
Who It Helps
People diagnosed with Parkinson's looking for specialist, team-based care, mainly in the United States.
No fee is mentioned for using the finder; the page does not state what care at the centres costs — ask each centre about fees, referral and insurance cover. Note: The centres are clinical services, typically at academic medical centres; the page does not state costs, so ask each centre about fees, referral and insurance cover.
Copy link

CurePSP Quality of Life Respite Program — grants for in-home respite care for families living with PSP, CBD or MSA (United States)

https://www.psp.org/ineedsupport/respiteprogram
Free to the family — 'no out-of-pocket cost to you'; the grant covers care 'up to $40/hour', paid directly to the agency. Note: US only and means-tested; grants must start within 2 months of approval and be used within a year, and each family can receive at most two.
What It Does
Grants pay for professional, agency-based in-home care so family care partners can take a break. The money goes directly to a licensed home-care agency, covering up to $40 an hour. Apply online with a form completed by the person's neurologist or primary care doctor; applications are accepted on a rolling basis and decisions usually take about two weeks.
Who It Helps
US families caring at home for someone with a clinical diagnosis of PSP, CBD or MSA, with combined annual income under $90,000, no long-term care insurance and no more than 20 hours a week of professional respite.
Free to the family — 'no out-of-pocket cost to you'; the grant covers care 'up to $40/hour', paid directly to the agency. Note: US only and means-tested; grants must start within 2 months of approval and be used within a year, and each family can receive at most two.
Copy link

Mission MSA (formerly The MSA Coalition) — patient support line and support group finder for multiple system atrophy (United States)

https://missionmsa.org/finding-support/
The page does not state a fee — ask when you contact them. Note: The support line is open only three days a week; the page does not state fees — ask when you contact them.
What It Does
Mission MSA's patient support line gives guidance, information and community resources, Tuesday to Thursday, 11am–5.30pm Eastern Time (call 866-737-5999; voicemails are returned within two business days). The page lists support groups for MSA only or for several atypical parkinsonisms, some for care partners only, in the US and Canada. It also runs the MSA Connect online community.
Who It Helps
People living with MSA, their care partners, families and friends, mainly in the United States; some groups are also open to people affected by PSP, CBD or Lewy body dementia.
The page does not state a fee — ask when you contact them. Note: The support line is open only three days a week; the page does not state fees — ask when you contact them.
Copy link

NINDS — Parkinson's disease information from the US National Institutes of Health (United States)

https://www.ninds.nih.gov/health-information/disorders/parkinsons-disease
Free to use; no fee is mentioned on the page. Note: NIH is moving its institute websites into a new NIH.gov; it says old addresses are redirected to matching pages where possible, so this page may move.
What It Does
Plain-language information from the National Institute of Neurological Disorders and Stroke on what Parkinson's disease is, its symptoms, who is more likely to get it, how it is diagnosed and treated, the latest research updates, clinical trials and where to find more information.
Who It Helps
People with Parkinson's, their families and anyone wanting reliable background information; written for a US audience.
Free to use; no fee is mentioned on the page. Note: NIH is moving its institute websites into a new NIH.gov; it says old addresses are redirected to matching pages where possible, so this page may move.
Copy link

Parkinson Canada — nationwide support groups for people with Parkinson's and care partners, found through CareFinder (Canada)

https://www.parkinson.ca/resources/support-groups/
The page does not state a fee — ask when you contact them. Note: What is available depends on your community.
What It Does
A nationwide network of local and national support groups where people living with Parkinson's and care partners connect, share experiences and find resources. Search the CareFinder directory for groups and other services near you. If you prefer one-to-one support, the 1:1 Peer support program can match you with a trained volunteer mentor.
Who It Helps
People living with Parkinson's in Canada, and their care partners and family members.
The page does not state a fee — ask when you contact them. Note: What is available depends on your community.
Copy link

Epilepsy & Seizures

Epilepsy Foundation — Personalised Epilepsy Support with an Epilepsy Advisor (Australia)

https://epilepsyfoundation.org.au/about-us/our-services/information-and-support/epilepsy-support-service/
The page does not state a fee — ask when you contact them. Note: No fee is stated; not a crisis line (allow 1–2 business days). The Foundation says it supports people in Victoria and NSW; elsewhere you may be linked to your state epilepsy organisation.
What It Does
Epilepsy Advisors work alongside you over a period of support on goals you set together: Epilepsy Management Plans and Emergency Medication Management Plans (or FND plans), self-management, safety planning, liaising with medical and education professionals, and information on epilepsy-related funding. Start through the National Epilepsy Support Service (1300 761 487) or its contact form; professionals can refer.
Who It Helps
People living with epilepsy, and their families and support networks, who need more time and support than a one-off enquiry. You can contact the service yourself, or a health professional can refer you.
The page does not state a fee — ask when you contact them. Note: No fee is stated; not a crisis line (allow 1–2 business days). The Foundation says it supports people in Victoria and NSW; elsewhere you may be linked to your state epilepsy organisation.
Copy link

Epilepsy Smart Australia — free peer-led epilepsy support groups, online and face to face (Australia)

https://epilepsysmart.org.au/peer-led-support-groups/
Free (the page says 'Peer-led support is a free service'). Note: Not a counselling service and does not give medical advice or crisis support; face-to-face groups depend on demand and some groups are for one city or territory.
What It Does
Volunteer facilitators with lived experience of epilepsy run groups for men, women, adults, young people aged 13–17, parents, carers and partners, and people in their later years, plus some local groups (ACT, Brisbane, Melbourne). Groups meet as online meetups, chat groups or face to face (pending demand). Register your interest with the National Epilepsy Support Service on 1300 761 487 or the client contact form.
Who It Helps
People living with epilepsy in Australia and their families, carers and partners; you are linked to a group by age, interest, need and availability.
Free (the page says 'Peer-led support is a free service'). Note: Not a counselling service and does not give medical advice or crisis support; face-to-face groups depend on demand and some groups are for one city or territory.
Copy link

Epilepsy Action Australia — book a phone or video appointment with an epilepsy nurse (Australia)

https://www.epilepsy.org.au/book-online/
The booking page does not state a fee. Epilepsy Action Australia's 'Become a Client' page says registering as a client is 'complimentary' and includes access to a specialist epilepsy nurse for education via telehealth. Note: Client registration is for anyone with a diagnosis of epilepsy; the booking page does not state fees for professionals, appointment length or waiting time — check when you book.
What It Does
Book a phone or video call with one of Epilepsy Action Australia's epilepsy nurses online: choose the category that suits you (families/individuals, GPs, or other professionals) and press 'Make a booking'. It also runs the National Epilepsy Line, 1300 37 45 37 (1300 EPILEPSY), open during office hours in each state and territory.
Who It Helps
Anyone living with epilepsy and their family and significant others; GPs, allied health workers, disability support workers, NDIS planners, teachers and employers can also book.
The booking page does not state a fee. Epilepsy Action Australia's 'Become a Client' page says registering as a client is 'complimentary' and includes access to a specialist epilepsy nurse for education via telehealth. Note: Client registration is for anyone with a diagnosis of epilepsy; the booking page does not state fees for professionals, appointment length or waiting time — check when you book.
Copy link

Epilepsy Queensland — free epilepsy education and training for families and unpaid carers (Queensland)

https://epilepsyqueensland.com.au/supporting-people-with-epilepsy/education-training/
Free for people with epilepsy, their families and unpaid carers (the page says 'Family training is free'); NDIS-funded tailored sessions are quoted. Note: A Queensland service; only family training is free — NDIS-funded tailored sessions are charged by quote.
What It Does
Sessions cover seizure types and triggers, safety at home and in public, medication and side effects, mental health, seizure first aid and how to give midazolam (theory and practical). Join a scheduled session, ask for training tailored to a management plan, or use the self-paced e-learning; the Living Well team (1300 852 853, Monday–Friday 9am–4:30pm) answers questions and gives ongoing support.
Who It Helps
People with epilepsy, including the newly diagnosed, and their family members and unpaid carers. Scheduled sessions are held at locations throughout Queensland.
Free for people with epilepsy, their families and unpaid carers (the page says 'Family training is free'); NDIS-funded tailored sessions are quoted. Note: A Queensland service; only family training is free — NDIS-funded tailored sessions are charged by quote.
Copy link

Epilepsy ACT — free local epilepsy support, management plans and referral (Australian Capital Territory)

https://epilepsyact.org.au/support/
Free (the page says 'This is a free community service'). Note: A local service for the ACT and surrounding region; the office is open Monday to Thursday, 9am to 4pm, and closed on Fridays.
What It Does
Staff work with individuals and families to create an Epilepsy Management Plan (often required by schools, child care, disability services and clubs), refer you to government and non-government health, disability and education services, and help with issues such as current driving policy, workplace discrimination, lifestyle strategies and support for parents and carers. Contact the office to start.
Who It Helps
People with epilepsy in the ACT and surrounding region, and their families, carers and support networks.
Free (the page says 'This is a free community service'). Note: A local service for the ACT and surrounding region; the office is open Monday to Thursday, 9am to 4pm, and closed on Fridays.
Copy link

Epilepsy WA — seizure-alert device loans for members, device display and information sessions (Western Australia)

https://www.epilepsywa.asn.au/seizure-alert-technology/
The device loans are free but only for Epilepsy WA members. Membership is 'from just $25 dollars per year': $25.00 (incl. GST) concession (pensioner or health care card holder) or $30.00 (incl. GST) single adult, as the membership page states. Note: You must be an Epilepsy WA member living in WA; loans are subject to availability, terms and conditions, and the booklet is being updated.
What It Does
Members who live in WA can borrow an Emfit tonic-clonic seizure alert bed sensor mat for one month, and a NightWatch device is loaned to children and young adults (subject to availability). You can also see Australia's largest display of seizure alert devices at the Nedlands office, join the information session held every two months, or read the booklet; call 1300 660 880 for help.
Who It Helps
People with epilepsy in Western Australia and their families and carers; loans are for Epilepsy WA members, and NightWatch loans are for children and young adults.
The device loans are free but only for Epilepsy WA members. Membership is 'from just $25 dollars per year': $25.00 (incl. GST) concession (pensioner or health care card holder) or $30.00 (incl. GST) single adult, as the membership page states. Note: You must be an Epilepsy WA member living in WA; loans are subject to availability, terms and conditions, and the booklet is being updated.
Copy link

Epilepsy Smart Schools — epilepsy training and management-plan support for schools (Australia)

https://epilepsysmart.org.au/resources/epilepsy-smart-schools/become-an-epilepsy-smart-school/
The page lists no fees; it describes Organisational Training for schools 'at a cost-effective price' — ask your local epilepsy organisation. Note: Fees are not listed on the page; training should be renewed every two years or when a student's Emergency Medication Management Plan changes.
What It Does
A school becomes an Epilepsy Smart School when every student with epilepsy has a current Epilepsy Management Plan (and Emergency Medication Management Plan if needed) and all staff do epilepsy education, plus emergency-medication training where relevant. Two courses can be eLearning or a live session (in person or virtual); the practical is session-only. Then ask your local epilepsy organisation for a certificate.
Who It Helps
Teachers, school nurses and other school staff across Australia, and parents and carers who want their child's school prepared to support a student with epilepsy.
The page lists no fees; it describes Organisational Training for schools 'at a cost-effective price' — ask your local epilepsy organisation. Note: Fees are not listed on the page; training should be renewed every two years or when a student's Emergency Medication Management Plan changes.
Copy link

Health New Zealand | Te Whatu Ora — epilepsy: seizures, first aid, diagnosis, treatment and self-care (New Zealand)

https://www.healthnz.govt.nz/health-topics/conditions-treatments/brain-and-nerves/epilepsy
Free to use; no fee is mentioned on the page.
What It Does
A plain-language page on types of seizures, how to help someone having a seizure and when to call 111, causes, diagnosis (EEG, CT or MRI scans), treatment with medication, surgery or medically supervised diets, and self-care, with links to Epilepsy New Zealand, KidsHealth, ACC and the NZ Transport Agency's driving rules.
Who It Helps
People in New Zealand who have had a seizure or live with epilepsy, and their families, friends and carers.
Free to use; no fee is mentioned on the page.
Copy link

Epilepsy Society Helpline — confidential phone, email and webchat support about epilepsy (UK)

https://epilepsysociety.org.uk/helpline
The page does not state a call cost or fee — ask when you contact them. Note: It cannot give medical advice and is not open 24 hours — the page points to Samaritans (116 123) when the helpline is closed.
What It Does
Helpline operators, all trained in counselling skills, offer emotional support, information and signposting by phone (0300 102 0024), email (helpline@epilepsysociety.org.uk) or webchat when an operator is free. Open Monday and Wednesday 9am–7.30pm, Tuesday, Thursday and Friday 9am–4pm, and Saturday 9am–12.30pm (closed on bank holidays). Interpreters in over 200 languages for people living in the UK.
Who It Helps
Anyone affected by epilepsy — people with epilepsy, their families and friends, and professionals such as doctors, nurses, care workers, teachers and employers.
The page does not state a call cost or fee — ask when you contact them. Note: It cannot give medical advice and is not open 24 hours — the page points to Samaritans (116 123) when the helpline is closed.
Copy link

Epilepsy Scotland Helpline — free, confidential epilepsy helpline with no time limit on calls (Scotland)

https://www.epilepsyscotland.org.uk/support-for-you/our-helpline/
Free (the page says 'Our Helpline is free and confidential').
What It Does
Call 0808 800 2200, Monday to Friday 10am–4:30pm, to ask questions, talk things through or be signposted, with follow-up calls if you would like them. You can also book an appointment at the Glasgow office, request a Zoom call from anywhere in Scotland by emailing contact@epilepsyscotland.org.uk, or send a private message on social media. Interpreters are available in over 170 languages.
Who It Helps
Anyone with questions about epilepsy — people who are newly diagnosed or living with epilepsy, their families, carers, friends and colleagues, and professionals.
Free (the page says 'Our Helpline is free and confidential').
Copy link

Epilepsy Scotland Check-in service — free weekly wellbeing calls for about 10 weeks (Scotland)

https://www.epilepsyscotland.org.uk/support-for-you/check-in-service/
Free (the page says 'This is a free service'). Note: Only for people living in Scotland who have a diagnosis of epilepsy.
What It Does
An experienced helpline officer phones you each week for around 10 weeks to check in on your mental health and wellbeing and to offer ongoing emotional and practical support with your epilepsy. It was set up to address the mental health impact of epilepsy and the isolation that can come with a diagnosis. Refer yourself by calling 0808 800 2200 or emailing contact@epilepsyscotland.org.uk.
Who It Helps
Anyone living in Scotland who has a diagnosis of epilepsy and may be going through a difficult time in their life.
Free (the page says 'This is a free service'). Note: Only for people living in Scotland who have a diagnosis of epilepsy.
Copy link

Epilepsy Scotland Welfare Rights service — benefits checks, form-filling and appeals (Scotland)

https://www.epilepsyscotland.org.uk/support-for-you/benefits-advice/
The page does not state a fee — ask when you contact them. Note: The service is in high demand and there may be a waiting list; tribunal representation is only offered to clients in the central belt of Scotland.
What It Does
Welfare Rights Officers check which benefits you may be entitled to and do a benefit calculation, help complete application and review forms, guide you through medical assessments and help challenge decisions, including tribunal representation in some areas. They also advise on Scottish Welfare Fund crisis grants and Scottish disability benefits. Phone 0141 427 4911 for enquiries and appointments.
Who It Helps
People with epilepsy and associated conditions, and their families, in Scotland; the service is based in Glasgow and aims to cover as much of Scotland as it can.
The page does not state a fee — ask when you contact them. Note: The service is in high demand and there may be a waiting list; tribunal representation is only offered to clients in the central belt of Scotland.
Copy link

Young Epilepsy — One-to-one Youth Support for children and young people aged 8–25 (UK)

https://www.youngepilepsy.org.uk/i-have-epilepsy/one-to-one-support
The page does not state a fee — ask when you contact them. Note: Referrals are reviewed every two weeks and some people are signposted to another service; the page does not say which parts of the UK are covered.
What It Does
A Youth Support Coordinator gives tailored support — someone to listen, information and tools to understand your condition, help with challenges at school or college, or more intensive support — mostly online, over two to twelve sessions depending on need. Anyone can submit the referral form: the young person, a parent or a professional. Referrals are reviewed every two weeks.
Who It Helps
Children and young people living with epilepsy, primarily aged 8 to 25.
The page does not state a fee — ask when you contact them. Note: Referrals are reviewed every two weeks and some people are signposted to another service; the page does not say which parts of the UK are covered.
Copy link

SUDEP Action — free specialist bereavement support after an epilepsy-related death (UK)

https://sudep.org/bereavement-support/
Free (the charity's home page says 'Our services include free bereavement support, counselling and help with understanding the inquest process').
What It Does
A specialist service for people bereaved by epilepsy, with no time limits: a listening ear, a qualified telephone counselling service, information and advice, support through the inquest process and investigations, a mediation service, and chances to meet others through memorial services, conferences and coffee clubs. Call the support team on 01235 772852 or email support@sudep.org.
Who It Helps
Families, partners and friends whose loved one has died suddenly from an epilepsy-related death, including SUDEP (sudden unexpected death in epilepsy).
Free (the charity's home page says 'Our services include free bereavement support, counselling and help with understanding the inquest process').
Copy link

EpSMon — free epilepsy self-monitoring app from SUDEP Action (UK)

https://sudep.org/about-research/epsmon-app/
Free (the page says SUDEP Action has made EpSMon '100% FREE for all UK users'). Note: For adults (18+) in the UK; it is a self-monitoring tool to share with your epilepsy professional, not a medical service.
What It Does
A personal tracking app that uses simple yes/no questions, prompts you to review your epilepsy every three months, logs seizures, sends medication reminders, gives information on seizure-related risks including SUDEP, and makes self-assessment reports you can print for your doctor. Download it from the App Store or Google Play; it is designed to support professional care, not replace it.
Who It Helps
Adults aged over 18 with epilepsy who live in the UK.
Free (the page says SUDEP Action has made EpSMon '100% FREE for all UK users'). Note: For adults (18+) in the UK; it is a self-monitoring tool to share with your epilepsy professional, not a medical service.
Copy link

Epilepsy Action — Talk and Support groups in person and online, including a New to Epilepsy group (UK)

https://www.epilepsy.org.uk/support-groups
The page does not state a fee — ask when you contact them. Note: For adults (18+) in the UK; independent groups are run separately from Epilepsy Action.
What It Does
Epilepsy Action hosts its own local support groups and supports a network of independent groups across the UK. Online groups include general groups, parents and carers, New to Epilepsy (for people newly diagnosed or waiting for a diagnosis), employment, and men's and women's groups. Choose your area or reserve a place in an online group on the page; you fill in a short registration form at your first meeting.
Who It Helps
Anyone in the UK aged over 18 who is living with epilepsy; the parents and carers, men's and women's groups also welcome family members and carers.
The page does not state a fee — ask when you contact them. Note: For adults (18+) in the UK; independent groups are run separately from Epilepsy Action.
Copy link

Dravet Syndrome UK — family support team, welcome pack and bereavement service (UK)

https://www.dravet.org.uk/families/emotional-and-practical-support/
The page does not state a fee to register — ask when you contact them; the Family Guide in the welcome pack is free. Note: Most services are for families registered with Dravet Syndrome UK; the free legal advice tool (Access Ava) is only for parent/carers in England caring for an adult.
What It Does
Families who register get a welcome pack with a free printed Family Guide, one-to-one help from a Family Support Team with personal experience of Dravet syndrome (for example on your rights and getting care), a moderated parent/carer group on Facebook, an annual family weekend away, a parents' conference every other November, and a bereavement service with a support pack and grant. Register via its Join Us page.
Who It Helps
Parents, carers and siblings of children and adults living with Dravet syndrome, a rare and complex neurological condition, in the UK.
The page does not state a fee to register — ask when you contact them; the Family Guide in the welcome pack is free. Note: Most services are for families registered with Dravet Syndrome UK; the free legal advice tool (Access Ava) is only for parent/carers in England caring for an adult.
Copy link

BC Epilepsy Society Mental Wellness Program — online counselling on a sliding-scale fee (British Columbia, Canada)

https://bcepilepsy.com/programs/bc-epilepsy-societys-mental-wellness-program/
A fee is charged on a sliding scale (the page says 'Clients will be charged a fee for this program, but a sliding scale will ensure it is accessible and affordable to all'); amounts are not listed. Note: Fees are not listed, and the page does not say whether you must live in British Columbia — ask when you call.
What It Does
One-on-one online counselling with Registered Clinical Counsellors or Canadian Certified Counsellors, most of whom live with epilepsy and all of whom have done an epilepsy training program. Refer yourself by calling 604-875-6704 to book an online intake meeting, or ask your doctor to fax the referral form; a counselling session is then scheduled.
Who It Helps
People living with epilepsy and their immediate family who are seeking counselling for an epilepsy-related reason.
A fee is charged on a sliding scale (the page says 'Clients will be charged a fee for this program, but a sliding scale will ensure it is accessible and affordable to all'); amounts are not listed. Note: Fees are not listed, and the page does not say whether you must live in British Columbia — ask when you call.
Copy link

Epilepsy Ireland — one-to-one support from your local Community Resource Officer (Ireland)

https://www.epilepsy.ie/content/one-one-support
The page does not state a fee — ask when you contact them. Note: The page does not state waiting times — ask your local Community Resource Officer.
What It Does
Community Resource Officers give information, advice or a listening ear in person, by phone, on Zoom or by email, and also in community and hospital outreach settings. They can help with questions about employment, law, education provision and social welfare entitlements. Find your local officer's details on Epilepsy Ireland's 'Our Local Service' page.
Who It Helps
People with epilepsy of all ages in Ireland, and their families and carers.
The page does not state a fee — ask when you contact them. Note: The page does not state waiting times — ask your local Community Resource Officer.
Copy link

Epilepsy Ireland Louise Young Seizure Alarm Fund — reimbursement for two seizure-detection alarms (Ireland)

https://www.epilepsy.ie/content/epilepsy-ireland-louise-young-seizure-alarm-fund
The fund reimburses the cost of the two named devices (as the page states). Note: You cannot refer yourself and GP referrals are not accepted; the fund is limited and covers only the Epimonitor and Nightwatch+.
What It Does
Since September 2025 the fund has reimbursed the cost of two named seizure-detection devices: the Epimonitor wrist monitor (for ages 6+) and the Nightwatch+ sleep sensor (for ages 4+). Your epilepsy specialist team refers you directly to Epilepsy Ireland, which then explains how reimbursement works; Community Resource Officers can give general information on other alarms.
Who It Helps
People with epilepsy across Ireland, and their families, who are referred by their epilepsy specialist (epilepsy nurse, epilepsy nurse specialist, neurologist or epileptologist).
The fund reimburses the cost of the two named devices (as the page states). Note: You cannot refer yourself and GP referrals are not accepted; the fund is limited and covers only the Epimonitor and Nightwatch+.
Copy link

National Association of Epilepsy Centers — find an accredited specialist epilepsy center (United States)

https://naec-epilepsy.org/find-a-center
No fee is mentioned for using the directory; ask each center about costs and insurance. Note: Lists only NAEC member centers, some shown as 'Applicants' or 'Conditionally Accredited'; NAEC advises asking for a referral if a general neurologist has not controlled your seizures after 12 months.
What It Does
Search by city or ZIP code to find epilepsy centers that have completed or applied for NAEC accreditation; centers meeting all criteria are listed as Level 3 or Level 4. The site explains when to seek an epilepsy center — for example seizures continuing after more than a year of treatment or after two different medications, or unacceptable side effects.
Who It Helps
People in the United States whose seizures are not well controlled or who have medication side effects, their families, and referring doctors.
No fee is mentioned for using the directory; ask each center about costs and insurance. Note: Lists only NAEC member centers, some shown as 'Applicants' or 'Conditionally Accredited'; NAEC advises asking for a referral if a general neurologist has not controlled your seizures after 12 months.
Copy link

Epilepsy Foundation — Jeanne A. Carpenter Epilepsy Legal Defense Program: free initial legal consultation (United States)

https://www.epilepsy.com/legal-help
Initial consultation and up to three hours of services at no cost (the page says referral lawyers 'agree to provide an initial consult and services up to three hours at no cost to you'). Note: The free help covers an initial consult and up to three hours; the page does not say what further legal work costs.
What It Does
Helps people with epilepsy and their families get legal help on employment, school and education (including IDEA), public accommodations such as camps, childcare and fitness clubs, housing, health insurance, police and first responder issues, and criminal justice. Apply online for a referral to a lawyer; referral lawyers give an initial consult and up to three hours of services at no cost.
Who It Helps
People with epilepsy and their families who need legal help with a problem linked to epilepsy.
Initial consultation and up to three hours of services at no cost (the page says referral lawyers 'agree to provide an initial consult and services up to three hours at no cost to you'). Note: The free help covers an initial consult and up to three hours; the page does not say what further legal work costs.
Copy link

Canadian Epilepsy Alliance — find your local community epilepsy organization (Canada)

https://www.canadianepilepsyalliance.org/find-your-local-cea-office/
No fee is mentioned for using the directory or the toll-free line; ask each local organization about its services. Note: Programs differ between local organizations, so check what the one serving your area offers.
What It Does
Lists the 25 community-based epilepsy organizations in the Alliance, province by province, with addresses and websites. These organizations offer counselling, education, advocacy, employment help, children's programs, support groups and lending libraries. Or call 1-866-EPILEPSY (1-866-374-5377) to be connected with the organization nearest you.
Who It Helps
People living with epilepsy in Canada and their families.
No fee is mentioned for using the directory or the toll-free line; ask each local organization about its services. Note: Programs differ between local organizations, so check what the one serving your area offers.
Copy link

Epilepsy Toronto — employment counselling, job search help and workplace accommodation advice (Toronto, Canada)

https://epilepsytoronto.org/about-us/programs-and-services/epilepsy-employment-services/
The page does not state a fee; Epilepsy Toronto says 'the majority of our services are offered free of charge' — ask when you contact them. Note: A Toronto agency; the employment page does not say whether you must live in Toronto.
What It Does
Employment staff offer one-to-one counselling and referrals, a Job Seekers Program and job search support groups, career planning, interview and resume help, job development and placement, and workplace risk assessments with recommended accommodations; they also give epilepsy training to employers. Complete the online intake form to request an intake session.
Who It Helps
People living with epilepsy and other seizure disorders in the Toronto area who are looking for work or want to keep or adjust their job, and their employers.
The page does not state a fee; Epilepsy Toronto says 'the majority of our services are offered free of charge' — ask when you contact them. Note: A Toronto agency; the employment page does not say whether you must live in Toronto.
Copy link

DVLA — epilepsy and driving: telling DVLA and when you can reapply for a licence (Great Britain)

https://www.gov.uk/epilepsy-and-driving
Free to use; no fee is mentioned on the page. Note: For DVLA licences (Great Britain); the page warns you can be fined up to £1,000 if you do not tell DVLA about a condition that affects your driving.
What It Does
Official guidance: you must tell DVLA and stop driving straight away if you have had an epileptic seizure or blackout. It explains how to report online or with form FEP1 (car or motorbike) or FEP1V (bus, coach or lorry), and when you can reapply after different types of seizure, including a first seizure, seizures only while asleep and seizures that do not affect consciousness.
Who It Helps
Drivers in Great Britain who have had an epileptic seizure, a first-ever seizure or a blackout, and their families.
Free to use; no fee is mentioned on the page. Note: For DVLA licences (Great Britain); the page warns you can be fined up to £1,000 if you do not tell DVLA about a condition that affects your driving.
Copy link

International Bureau for Epilepsy — directory of national epilepsy associations (IBE Chapters) (Worldwide)

https://www.ibe-epilepsy.org/about/ibe-chapters/
No fee is mentioned for using the directory. Note: The IBE is an umbrella body for national organisations, so for support contact the chapter in your country.
What It Does
Choose a world region (Africa, Eastern Mediterranean, Europe, Latin America, North America, South East Asia or Western Pacific) to see the IBE member organisations in each country, with addresses, websites and contact names. Use it to find the national epilepsy association where you live or are moving to.
Who It Helps
People with epilepsy, their families and carers anywhere in the world who are looking for their national epilepsy organisation.
No fee is mentioned for using the directory. Note: The IBE is an umbrella body for national organisations, so for support contact the chapter in your country.
Copy link

Stroke & TIA

Stroke Foundation EnableMe — free online stroke recovery hub, forums and goal tracker (Australia)

https://enableme.org.au/
Free (the page describes EnableMe as a free online resource).
What It Does
EnableMe is the Stroke Foundation's free online resource for life after stroke. It brings together stroke information and videos, forums and blogs where survivors and carers share experiences, a way to ask health professionals questions, research opportunities and a tool to set and track recovery goals. Sign up to use the forums, ask questions and set goals.
Who It Helps
People who have had a stroke, and their families and carers, in the months and years after stroke. Run for Australia, but the information can be read anywhere.
Free (the page describes EnableMe as a free online resource).
Copy link

Stroke Foundation — childhood stroke information, webinars and podcast for families (Australia)

https://strokefoundation.org.au/about-stroke/learn/childhood-stroke
Free to use; no fee is mentioned on the page.
What It Does
The Stroke Foundation's childhood stroke hub explains stroke in babies, children and teenagers (signs, causes and effects) and has a Childhood Stroke Podcast, webinar recordings and videos, tips for parents and young people, and information booklets. Families can call StrokeLine with questions about childhood stroke and join a Childhood Stroke mailing list.
Who It Helps
Parents, carers, family and friends of a baby, child or young person who has had a stroke (including before birth), and young survivors themselves. Australian service; readable anywhere.
Free to use; no fee is mentioned on the page.
Copy link

Australian Aphasia Association — monthly Zoom groups and links to local aphasia groups (Australia)

https://aphasia.org.au/living-with-aphasia/community-aphasia-groups/
The page does not state a fee — ask when you contact them. Note: The page does not state whether groups charge; local groups are run by different organisations and their details change, so check with the group before going.
What It Does
Explains how community aphasia groups help people with aphasia meet others and practise communicating, and links to a state-by-state list of in-person and online groups kept by the separate, volunteer-run Aphasia Community website. The association's own member-led Zoom group meets on the fourth Friday of each month at 1pm Queensland time; email zoom@aphasia.org.au for details.
Who It Helps
People with aphasia from any cause (most Zoom members have had a stroke), and family members and friends. Australia-wide.
The page does not state a fee — ask when you contact them. Note: The page does not state whether groups charge; local groups are run by different organisations and their details change, so check with the group before going.
Copy link

Stroke Aotearoa New Zealand — Community Stroke Navigators (Kaiārahi) for one-to-one support after stroke (New Zealand)

https://www.stroke.org.nz/affected-by-stroke/living-with-stroke/community-stroke-navigators/
Free (the page says 'This service is free').
What It Does
Community Stroke Navigators give people affected by stroke, and their whānau and friends, information and advice, connect them with services and explain what support is available locally, with one-to-one support for complex needs or areas without services. You or your health provider can use the referral form, or email help@stroke.org.nz or call 0800 78 76 53 (9am–5pm weekdays).
Who It Helps
Anyone in New Zealand affected by stroke — survivors, whānau, friends and carers. Navigators work across Aotearoa.
Free (the page says 'This service is free').
Copy link

Stroke Association — find a local or online stroke support group (UK)

https://www.stroke.org.uk/stroke/support/groups
The page does not state a fee — ask when you contact them. Note: Groups are run locally by volunteers, so meeting times and any small charges vary.
What It Does
A postcode search and map of about 400 stroke support groups across the UK, plus a list of online groups. Groups meet weekly, fortnightly or monthly, in person or online, and are run by volunteers, many of whom have had a stroke. Listings give the venue, usually a contact name, and a short description of the group. If there is nothing near you, the Stroke Support Helpline can suggest other support.
Who It Helps
Stroke survivors, carers, family and friends anywhere in the UK, at any stage of recovery.
The page does not state a fee — ask when you contact them. Note: Groups are run locally by volunteers, so meeting times and any small charges vary.
Copy link

Stroke Association — Childhood Stroke Support Team, parent connections and teacher sessions (UK)

https://www.stroke.org.uk/stroke/childhood
Parent-to-parent volunteer calls are free (as their sign-up page states); the main page does not state a fee for other support — ask when you contact them. Note: In an emergency call 999 — the page says to always call 999 if you spot signs of stroke in a child.
What It Does
The Childhood Stroke Support Team gives families practical information and emotional support — fill in a short form to request a call, or email childhoodstroke@stroke.org.uk. Parents can also join online 'Learn and Chat' sessions with a childhood stroke specialist, have one or two free calls with a trained parent volunteer whose child has had a stroke, and ask for an information session for their child's teachers.
Who It Helps
Parents and carers of babies, children and young people (from before birth up to 18) who have had a stroke, children and young people themselves, and school staff. UK.
Parent-to-parent volunteer calls are free (as their sign-up page states); the main page does not state a fee for other support — ask when you contact them. Note: In an emergency call 999 — the page says to always call 999 if you spot signs of stroke in a child.
Copy link

Chest Heart & Stroke Scotland Advice Line — free advice and referral to local stroke support (Scotland)

https://www.chss.org.uk/services/chest-heart-stroke-scotland-advice-line/
Free (the page says the Advice Line service is free and confidential; texts are charged at standard rates).
What It Does
A free, confidential advice line staffed by qualified Advice Line Practitioners. They answer questions about stroke (and chest, heart and Long Covid conditions), support emotional wellbeing, post booklets, and refer you to CHSS peer support groups, Kindness Calls and community support services. Freephone 0808 801 0899 (Mon–Fri 9am–4pm), text ADVICE to 66777, or use the online referral form.
Who It Helps
People in Scotland living with stroke or a chest, heart or Long Covid condition, whether newly diagnosed or living with it for years, and their families, carers and health workers.
Free (the page says the Advice Line service is free and confidential; texts are charged at standard rates).
Copy link

Northern Ireland Chest Heart & Stroke — Surviving Stroke services, including young stroke support (Northern Ireland)

https://nichs.org.uk/care-and-support/stroke-support
The page does not state a fee — ask when you contact them. Note: Northern Ireland only.
What It Does
NICHS's Surviving Stroke services help after a stroke or TIA: a Family Support Service, a post-rehab exercise programme (PREP), the Taking Control self-management programme, wellness sessions, the Inspire Choir and Young Stroke Support for younger survivors. They work with local Health and Social Care Trusts. Start by completing the 'Make a Referral' form — you, a family member or a health professional can refer.
Who It Helps
People in Northern Ireland who have had a stroke or TIA, their families and carers; Young Stroke Support offers peer support for younger survivors.
The page does not state a fee — ask when you contact them. Note: Northern Ireland only.
Copy link

Say Aphasia — peer-led drop-in groups and a weekly online group for people with aphasia (England and Wales)

https://www.sayaphasia.org/pages/category/drop-in-groups
Drop in with no need to book; groups ask for an optional monthly donation of £5 or more (as the group page states).
What It Does
Say Aphasia runs relaxed drop-in groups led by people who have aphasia themselves, in more than 20 towns across England and Wales, plus an online drop-in group every Wednesday at 10am on Zoom. There is no need to book — find a group, check its day and venue, and turn up; family members are welcome. You can complete an optional member form before your first visit.
Who It Helps
Adults with aphasia or a similar acquired communication disability (such as dysarthria or apraxia) after stroke, head injury, brain haemorrhage or brain tumour, and their families.
Drop in with no need to book; groups ask for an optional monthly donation of £5 or more (as the group page states).
Copy link

NHS inform — transient ischaemic attack (TIA or 'mini stroke'): symptoms, tests and lowering your risk (Scotland)

https://www.nhsinform.scot/illnesses-and-conditions/brain-nerves-and-spinal-cord/transient-ischaemic-attack-tia/
Free to use; no fee is mentioned on the page. Note: Information only, not an emergency service — the page says to phone 999 straight away if you suspect a TIA or stroke, and to have an urgent assessment even if symptoms go.
What It Does
Scotland's national health information page on TIA explains what a TIA is, the FAST signs, why you still need an urgent assessment even if symptoms pass, the causes (including atrial fibrillation), who is at higher risk, and the lifestyle changes, medicines and procedures used to lower the risk of a full stroke.
Who It Helps
Anyone who has had, or thinks they may have had, a TIA, and their family. Written for Scotland but useful across the UK.
Free to use; no fee is mentioned on the page. Note: Information only, not an emergency service — the page says to phone 999 straight away if you suspect a TIA or stroke, and to have an urgent assessment even if symptoms go.
Copy link

Irish Heart Foundation Stroke Connect Service — eight weeks of phone support after stroke (Ireland)

https://irishheart.ie/support-for-you/stroke-connect-service/
Free (the Irish Heart Foundation describes its eight-week telephone support after stroke as a free service).
What It Does
Stroke Connect gives eight weeks of weekly phone support as you return home from hospital: a coordinator assesses what matters most in your recovery and helps you work towards your goals, and professional counselling may be available (up to six sessions). If speaking is hard after the stroke, a family member can talk for you. You or a health professional fill in the online referral form.
Who It Helps
Adults (over 18) in Ireland who have recently left hospital after a stroke, and any stroke survivor who needs practical and emotional support, including people living with aphasia.
Free (the Irish Heart Foundation describes its eight-week telephone support after stroke as a free service).
Copy link

International Alliance for Pediatric Stroke — free Pediatric Stroke Family Tool Kit (United States)

https://iapediatricstroke.org/family-tool-kit/
Free — complimentary printed copies and free shipping within the US; shipping outside the US is case by case and a donation may be requested.
What It Does
A guide for families after a perinatal, childhood or teen stroke: what stroke is, plain explanations of medical terms, what to expect from the care team and state resources, and suggested support groups, reading and organisations. Read it free as a PDF or flip book in English or Spanish, or order a complimentary printed copy with the online form.
Who It Helps
Parents and families of babies, children and teenagers who have had a stroke, and clinicians who care for them. Printed copies ship free within the US; the PDF can be used anywhere.
Free — complimentary printed copies and free shipping within the US; shipping outside the US is case by case and a donation may be requested.
Copy link

Heart & Stroke — services and resources directory for life after stroke, including aphasia and peer support (Canada)

https://www.heartandstroke.ca/services-and-resources
Free to use; no fee is mentioned on the page. Note: It lists other organisations' services; Heart & Stroke says inclusion is not an endorsement, so check each service's own details.
What It Does
A directory of services for recovery after stroke or heart disease, sorted by topic: aphasia services, assistive devices, caregiver support, drug coverage, employment, financial support, finding a doctor, home care, rehabilitation, social and peer support, accessible housing and transportation. Choose a topic to see listings, with a separate French listing.
Who It Helps
People in Canada recovering from stroke or heart disease, and their family and care partners.
Free to use; no fee is mentioned on the page. Note: It lists other organisations' services; Heart & Stroke says inclusion is not an endorsement, so check each service's own details.
Copy link

Aphasia Institute — New Beginnings programme, community aphasia groups and family support (Toronto, Ontario, Canada)

https://www.aphasia.ca/programs-services/
New Beginnings costs $450 for the 8-week on-site or online programme; the Institute says it does not turn anyone away who is unable to pay. Note: Fees apply, and a recent speech pathology report is required with the referral.
What It Does
Programmes on site in North York (Toronto) and online: New Beginnings, an 8-week introduction to living with aphasia; an ongoing Community Aphasia Program; weekly family support groups; volunteer home visits; and programmes for primary progressive aphasia. A speech-language pathologist usually makes the referral, but anyone can start it by contacting the social workers.
Who It Helps
People with aphasia after stroke, brain injury or another acquired condition, or with primary progressive aphasia, and their families. On-site programmes are in North York, Toronto; online programmes are also offered.
New Beginnings costs $450 for the 8-week on-site or online programme; the Institute says it does not turn anyone away who is unable to pay. Note: Fees apply, and a recent speech pathology report is required with the referral.
Copy link

Multiple Sclerosis

MS Australia — list of MS clinics by state to share with your GP for a referral (Australia)

https://www.msaustralia.org.au/clinics/
No fee is mentioned for using the list. The page says some clinics are bulk-billing public clinics and others are private — ask each clinic about costs. Note: Most clinics need a referral from your GP. The list includes private and visiting specialist clinics as well as public ones.
What It Does
A state-by-state list of clinics across Australia with specialist experience in multiple sclerosis — MS, neurology and neuroimmunology clinics — with addresses, phone numbers and whether each is public or private. Filter by your state, find the clinic nearest you and share it with your GP, who can make the referral.
Who It Helps
People with MS or suspected MS anywhere in Australia, their families, and the GPs referring them.
No fee is mentioned for using the list. The page says some clinics are bulk-billing public clinics and others are private — ask each clinic about costs. Note: Most clinics need a referral from your GP. The list includes private and visiting specialist clinics as well as public ones.
Copy link

MS Plus — free one-on-one advice from MS nurses by phone or video (ACT, NSW, Victoria and Tasmania)

https://www.msplus.org.au/support-services/information-and-advice/ms-nurses-provide-free-one-on-one-advice
Free (the page's FAQ answers 'Is there a cost? No. The service is free.'). Note: Not an emergency service — for urgent medical concerns contact your treating team or emergency services. For people in the ACT, NSW, Victoria and Tasmania.
What It Does
Experienced MS nurses talk with you about a new diagnosis, the diagnostic process, symptoms, treatments and relapses, living well and finding support. Appointments of up to an hour are mostly by phone, with video on request. No referral is needed and there is no limit on how often you use it — call 1800 042 138 or use the online form, and an appointment is arranged.
Who It Helps
People newly diagnosed or living with MS, people going through diagnosis or worried they may have MS, and their family, partners, carers and friends, in the ACT, NSW, Victoria and Tasmania.
Free (the page's FAQ answers 'Is there a cost? No. The service is free.'). Note: Not an emergency service — for urgent medical concerns contact your treating team or emergency services. For people in the ACT, NSW, Victoria and Tasmania.
Copy link

MS Queensland NeuroAssist InfoLine — free phone information, NDIS access help and MS nurse referral (Queensland)

https://msqld.org.au/service/neuroassist-infoline/
Free (the page says it is 'made available for free to anyone who has questions about MS'). Note: MS Queensland is the Queensland MS organisation; people in other states can find their own state MS organisation through MS Australia.
What It Does
A free phone line for questions about MS, the NDIS and MS Queensland services. The team gives information and resources, guides you through an NDIS access application, refers you to the MS nurse for advice on a new diagnosis, treatment or relapse, and points you to services that suit you. Call 1800 177 591 or request a callback on the website.
Who It Helps
Anyone with questions about MS, the NDIS or MS Queensland services, including people living with MS and the family members and friends supporting them.
Free (the page says it is 'made available for free to anyone who has questions about MS'). Note: MS Queensland is the Queensland MS organisation; people in other states can find their own state MS organisation through MS Australia.
Copy link

Multiple Sclerosis New Zealand — find your regional MS society and its community advisors (New Zealand)

https://www.msnz.org.nz/contact-us/find-your-regional-ms-society/
The page does not state a fee — ask your regional society when you contact them. Note: Each regional society is its own organisation, so services and opening hours vary by region.
What It Does
Choose your region to get the contact details of one of 18 regional MS societies across Aotearoa. Their community advisors give information on MS symptoms and management, local support, social and exercise groups, guidance on Work and Income applications and the Lottery Individuals with Disabilities fund, and individual advocacy. You can refer yourself or someone else.
Who It Helps
People with MS in New Zealand and their families, whānau, carers and employers; many regional societies also support people with other neurological conditions.
The page does not state a fee — ask your regional society when you contact them. Note: Each regional society is its own organisation, so services and opening hours vary by region.
Copy link

MS Trust — 'MS services near me' map to find MS nurses, MS hospital services and therapists (UK)

https://mstrust.org.uk/information-support/support-services/ms-services-near-me
No fee is mentioned for using the map; NHS and other services listed set their own terms.
What It Does
Enter your postcode or town and a distance to search a map of MS services near you: MS nurses, hospitals with MS services, childhood MS services, MS therapy centres, neuropsychologists, physiotherapists, occupational and speech therapists, rehabilitation, driving mobility and disability living centres, and local support groups.
Who It Helps
Adults and children with MS in the UK, their families and carers, and professionals looking for local MS services.
No fee is mentioned for using the map; NHS and other services listed set their own terms.
Copy link

MS Ireland Community Worker Service — regional casework and local programmes for people with MS (Ireland)

https://www.ms-society.ie/community-worker-service
The page does not state a fee — ask your Community Worker when you contact them. Note: Some classes need booking and places can be limited.
What It Does
Community Workers in 10 regional areas support people with MS and their families at diagnosis and later — emotional support, social welfare and medical card applications, employment, education, housing and symptoms — and refer on to other services. Where resources allow, they also run exercise classes, self-management programmes and newly diagnosed days. Start with the expression-of-interest form.
Who It Helps
People with MS living in Ireland and their families.
The page does not state a fee — ask your Community Worker when you contact them. Note: Some classes need booking and places can be limited.
Copy link

National MS Society — Find Doctors & Resources: search MS healthcare providers and local services by ZIP code (United States)

https://www.nationalmssociety.org/resources/get-support/find-doctors-and-resources
No fee is mentioned for using the search tool; the providers it lists set their own charges. Note: The Society does not endorse the providers listed and says the information is not guaranteed to be accurate — check details with each provider.
What It Does
A search tool for healthcare providers and services near you in eight categories: healthcare providers, emotional support, legal resources, financial help, mobility and accessibility, home help and advanced care, independent living, and medical and assistive equipment. Filter healthcare providers by 'Partner in MS Care' or 'Comprehensive Care Center' to find MS expertise.
Who It Helps
People with MS in the United States and their families and care partners.
No fee is mentioned for using the search tool; the providers it lists set their own charges. Note: The Society does not endorse the providers listed and says the information is not guaranteed to be accurate — check details with each provider.
Copy link

MSAA Equipment Distribution Program — mobility, safety and daily-living products at no charge (United States)

https://mymsaa.org/msaa-help/assistive-equipment/
Free to people who qualify (the page says MSAA provides these products 'at no charge to individuals with MS who qualify for assistance'). Note: US residents only. Income-tested (the 9/2026 application sets $47,000 a year for a one-person household), one item per application with no returns, and not again within three years.
What It Does
The Multiple Sclerosis Association of America ships one product per application — such as a grab bar, shower chair, walker, wide-grip utensil set or yoga mat — directly to people with MS who qualify. Apply online (uploading a letter or prescription showing your MS diagnosis) or by mail or fax; a Spanish application is available. You cannot get MSAA equipment again within three years.
Who It Helps
US residents with MS who meet MSAA's income limit and have not received MSAA equipment in the last three years.
Free to people who qualify (the page says MSAA provides these products 'at no charge to individuals with MS who qualify for assistance'). Note: US residents only. Income-tested (the 9/2026 application sets $47,000 a year for a one-person household), one item per application with no returns, and not again within three years.
Copy link

MS Canada Quality of Life Program — grants of up to $1,000 a year for equipment and assistive technology (Canada)

https://mscanada.ca/quality-of-life-equipment-program
Grants of up to $1,000 per person per calendar year (as the page states); no application fee is mentioned. Note: Income-tested (MS Canada sets its limits above Statistics Canada's standard LICO), with an appeals process. Apply and get approval before you buy — no 'after the fact' funding; grants must be used within 3 months.
What It Does
Grants of up to $1,000 per person each calendar year towards mobility equipment, safety aids and assistive technology — such as bathing aids, braces, hospital beds, lifts, scooters, wheelchairs, cooling clothing and vehicle modifications — and repairs. A separate cooling product programme helps with fans and air conditioners. Apply before you buy; an MS Navigator can help.
Who It Helps
Residents of Canada with a confirmed diagnosis of MS or an allied disease and an assessment of need from a health care professional (not needed for repairs), whose income meets the programme's low-income cut-off (LICO) test.
Grants of up to $1,000 per person per calendar year (as the page states); no application fee is mentioned. Note: Income-tested (MS Canada sets its limits above Statistics Canada's standard LICO), with an appeals process. Apply and get approval before you buy — no 'after the fact' funding; grants must be used within 3 months.
Copy link

Shift.ms — free app and online community for people recently diagnosed with MS, with 1:1 Buddy Network (Worldwide)

https://shift.ms/
Free (the site says 'our app is free' and describes 'Free 1:1 support'). Note: Peer support from people with MS, not medical advice. Joining is through the Shift.ms app, and you must be at least 16 to use it.
What It Does
A charity-run social network for people with MS, built around a free app: ask the community questions in a live feed, have private conversations, see how others make decisions, and watch a video library. Its Buddy Network matches you with an experienced person with MS for free one-to-one emotional support from the point of diagnosis.
Who It Helps
People with MS aged 16 and over anywhere in the world, especially those who have recently been diagnosed.
Free (the site says 'our app is free' and describes 'Free 1:1 support'). Note: Peer support from people with MS, not medical advice. Joining is through the Shift.ms app, and you must be at least 16 to use it.
Copy link

Motor Neurone Disease (MND / ALS)

MND Victoria Counselling Service — free counselling for people with MND and their families (Victoria and Tasmania)

https://www.mnd.org.au/counselling-service
Free (the FAQ says it 'is provided at no cost to people with MND and their families or carers'). Note: For registered MND Victoria clients; access is by referral from your MND Advisor/Support Coordinator.
What It Does
Free, confidential counselling sessions to help people with motor neurone disease, their families and carers work through the emotional impact of the disease, develop coping strategies and clarify goals. Sessions run on weekdays by Zoom, phone or face to face at MND Victoria's Canterbury office. Ask your MND Advisor/Support Coordinator to refer you.
Who It Helps
Registered MND Victoria clients in Victoria and Tasmania — people living with MND and their family members and carers.
Free (the FAQ says it 'is provided at no cost to people with MND and their families or carers'). Note: For registered MND Victoria clients; access is by referral from your MND Advisor/Support Coordinator.
Copy link

MND NSW MND Advisors — home visits, information and referrals for people with MND (NSW, ACT and NT)

https://www.mndnsw.org.au/what-we-do/support-and-services/176-advisor.html
The page does not state a fee. MND NSW's intake page says it sends a service agreement setting out 'all costs (if any)' before you decide to go ahead. Note: For people in NSW, the ACT and the NT; each Advisor covers an area and visits regional areas periodically.
What It Does
MND Advisors are qualified health and community care professionals who keep in touch through home visits, phone and email; give information to the newly diagnosed; help you work out the services you need and refer you to them; arrange access to MND NSW equipment, support groups and carer education; liaise with MND clinics; and advocate for you. Call 1800 777 175 or complete the online intake form.
Who It Helps
People with MND, their family members, carers and others close to them, and health and community care providers, in NSW, the ACT and the NT.
The page does not state a fee. MND NSW's intake page says it sends a service agreement setting out 'all costs (if any)' before you decide to go ahead. Note: For people in NSW, the ACT and the NT; each Advisor covers an area and visits regional areas periodically.
Copy link

MND Queensland — MND Advisors, equipment hire, allied health and voice banking (Queensland)

https://mndqld.org.au/support
The page describes a mix of free and funded (NDIS or aged care) services and does not state a fee for MND Advisor support — ask when you contact them. Voice banking is free for clients aged 65 and over. Note: For people in Queensland. Equipment hire is for registered clients and needs a request from an allied health professional; allied health is usually paid through an NDIS plan or a My Aged Care package.
What It Does
Your first step is an MND Advisor, who gives emotional support after diagnosis, practical information, help getting equipment, referrals and advocacy by phone, email or home visit. MND Queensland also hires out mobility equipment and assistive technology across Queensland, offers NDIS support coordination, allied health and a voice banking clinic. Call 1800 777 175 or register online.
Who It Helps
People diagnosed with MND in Queensland, their family members and carers, and health and community care providers.
The page describes a mix of free and funded (NDIS or aged care) services and does not state a fee for MND Advisor support — ask when you contact them. Voice banking is free for clients aged 65 and over. Note: For people in Queensland. Equipment hire is for registered clients and needs a request from an allied health professional; allied health is usually paid through an NDIS plan or a My Aged Care package.
Copy link

MNDAWA MND Advisory Service — home visits, emotional support and care coordination for people with MND (Western Australia)

https://www.mndawa.asn.au/page/73/mnd-advisory-service
The page does not state a fee — ask when you contact MNDAWA. Note: For people in Western Australia; office hours are Monday to Friday, 8.30am to 4.30pm.
What It Does
MNDAWA Advisors give emotional support and guidance to people diagnosed with MND and their families, keep in regular contact through home visits with follow-up by phone and email, liaise with health teams, community services and MND clinics, and make referrals so you are linked to the services you need. Use the enquiry form, phone 08 6186 4133 or email admin@mndawa.asn.au.
Who It Helps
People in Western Australia diagnosed with MND and their family members and carers.
The page does not state a fee — ask when you contact MNDAWA. Note: For people in Western Australia; office hours are Monday to Friday, 8.30am to 4.30pm.
Copy link

MND NZ Support Advisors — free specialist support and advice for people with MND, nationwide (New Zealand)

https://mnd.org.nz/support-information/our-services/support-team/
Free (the page describes 'a free, specialised support and advisory service throughout New Zealand'). Note: Not an emergency service, and not part of any Te Whatu Ora region.
What It Does
Regional Support Advisors work alongside your healthcare team, meeting face to face and keeping in touch by phone, text, email and video. They link you with physiotherapists, dietitians, occupational and speech-language therapists and community nurses, help you deal with government agencies and specialist equipment services, and give information and education. Call the MND NZ office on 0800 444 474 to be connected.
Who It Helps
People living with MND anywhere in New Zealand and their families, whānau and carers.
Free (the page describes 'a free, specialised support and advisory service throughout New Zealand'). Note: Not an emergency service, and not part of any Te Whatu Ora region.
Copy link

MND Scotland Counselling Service — up to 8 free online counselling sessions (Scotland)

https://mndscotland.org.uk/support/counselling/
Free (up to 8 sessions, as the page states). Note: Adults (over 18) living in Scotland only; up to 8 sessions.
What It Does
Up to eight free one-to-one sessions with a qualified therapist, delivered online by MND Scotland's own counselling team, for people affected by motor neurone disease including partners, family members and carers. Counsellors are trained in Acceptance and Commitment Therapy and can work with people who use communication aids. Complete the referral form; MND Scotland replies within ten working days.
Who It Helps
Anyone aged over 18 who lives in Scotland and has been affected by MND — the person with MND, partners, family and carers.
Free (up to 8 sessions, as the page states). Note: Adults (over 18) living in Scotland only; up to 8 sessions.
Copy link

Irish Motor Neurone Disease Association — free MND nurses, equipment loan, counselling and home-care grant once registered (Ireland)

https://www.imnda.ie/help-available/help--available
Free (the page says 'Registration is free' and registered clients 'can automatically avail of the below services free of charge'). Note: You need to register first. Equipment must be recommended by your OT, speech and language therapist, public health nurse or MND nurse. The home care grant (up to €200 a week) tops up HSE home care hours.
What It Does
Register free — yourself, or a family member or health professional with your consent — on Freefone 1800 403 403, by email or online, and an MND nurse aims to contact you. Registered clients can then use, free of charge, the IMNDA's 7 MND nurses (home visits and phone support), equipment on loan, a home care grant, counselling for you and one family member, in-person support groups and a caregivers' programme.
Who It Helps
People living with MND in Ireland, and their families and caregivers; the services are for people registered with the IMNDA.
Free (the page says 'Registration is free' and registered clients 'can automatically avail of the below services free of charge'). Note: You need to register first. Equipment must be recommended by your OT, speech and language therapist, public health nurse or MND nurse. The home care grant (up to €200 a week) tops up HSE home care hours.
Copy link

The ALS Association — find a Certified Treatment Center of Excellence or recognised ALS clinic (United States)

https://www.als.org/support/certified-centers-clinics
No fee is mentioned for using the finder; ask each clinic about costs and insurance. Note: A finder only — contact the clinic itself to arrange an appointment and ask about costs and insurance.
What It Does
Search by state or use the locator map to find ALS Association Certified Treatment Centers of Excellence, Recognized Treatment Centers and affiliated clinics across the US. These clinics use a multidisciplinary model, so you can see a neurologist, therapists, nurse, dietitian, speech-language pathologist, social worker, mental health professional and an ALS Association liaison in a single visit.
Who It Helps
People living with ALS in the United States and their families and caregivers.
No fee is mentioned for using the finder; ask each clinic about costs and insurance. Note: A finder only — contact the clinic itself to arrange an appointment and ask about costs and insurance.
Copy link

ALS Canada — register with your provincial ALS Society to access support and services (Canada)

https://als.ca/get-support/register-for-services/
The page does not state a fee — ask your provincial society when you register. Note: Some provincial societies may not support all the conditions listed, and services differ by province. Yukon and Nunavut are not on the province list — contact ALS Canada.
What It Does
Choose your province — Alberta and Northwest Territories, British Columbia, Manitoba, New Brunswick, Newfoundland and Labrador, Nova Scotia, Ontario, Prince Edward Island, Quebec or Saskatchewan — and you are sent to the right provincial ALS Society website to register. Registration gives access to all the supports and services that society offers in your province.
Who It Helps
People in Canada living with ALS, PLS, progressive muscular atrophy, progressive bulbar palsy, Kennedy's disease or certain hereditary spastic paraplegias, and those close to them.
The page does not state a fee — ask your provincial society when you register. Note: Some provincial societies may not support all the conditions listed, and services differ by province. Yukon and Nunavut are not on the province list — contact ALS Canada.
Copy link

International Alliance of ALS/MND Associations — find an ALS/MND association in your country (Worldwide)

https://www.als-mnd.org/find-als-mnd-association/
No fee is mentioned for using the directory; each association sets its own terms. Note: A directory of member associations; what each offers varies by country, and some entries link to a social-media page rather than a website.
What It Does
A worldwide directory of national and regional ALS/MND associations. Search by region (Africa, Asia, Australia-Oceania, Central America and Caribbean, Europe, Middle East, North America, South America) or by country to get each association's website and contact email, so you can find support where you live.
Who It Helps
People living with ALS/MND anywhere in the world, their families and carers, especially in countries not covered by other listings.
No fee is mentioned for using the directory; each association sets its own terms. Note: A directory of member associations; what each offers varies by country, and some entries link to a social-media page rather than a website.
Copy link

Migraine & Headache

Migraine & Headache Australia — directory of neurologists and pain specialists with an interest in headache (Australia)

https://headacheaustralia.org.au/doctor-directory/
No fee is mentioned for using the directory; ask each specialist about their fees. Note: A listing is not an endorsement, and the page does not say whether you need a referral — check with your GP and the specialist's rooms.
What It Does
Search by location (then filter by category and distance) to find neurologists and pain specialists who have shown an interest in headache through membership of the Australian and New Zealand Headache Society. Doctors ask to be listed by contacting the charity, which does not endorse or make representations about any listed provider.
Who It Helps
People in Australia living with migraine or other headache disorders, and their families, who want to find a specialist near them.
No fee is mentioned for using the directory; ask each specialist about their fees. Note: A listing is not an endorsement, and the page does not say whether you need a referral — check with your GP and the specialist's rooms.
Copy link

The Migraine Trust Helpline — free migraine information and support by phone, email and webchat (UK)

https://migrainetrust.org/get-support/our-information-and-support-service/
Free (the page says 'Our Helpline team offers free, confidential information and support for everyone affected by migraine'). Note: Support advisors are not medically qualified and cannot give medical, legal or welfare benefits advice.
What It Does
The Helpline team gives evidence-based information and support on types of migraine, triggers, access to appropriate healthcare, treatments, your rights in employment and education, and the emotional impact of migraine. Call 0808 802 0066, Monday to Friday 10am–4pm (leave a message out of hours for a call back within 48 hours), chat online in the same hours, or use the contact form at any time.
Who It Helps
Anyone affected by migraine. Information relates to the UK, and call-backs can only be made to UK numbers.
Free (the page says 'Our Helpline team offers free, confidential information and support for everyone affected by migraine'). Note: Support advisors are not medically qualified and cannot give medical, legal or welfare benefits advice.
Copy link

OUCH (UK) Cluster Headache Advice Line — 24-hour message line with call-backs from trained advisers (UK)

https://ouchuk.org/page/advice-line
The page does not state a call cost or fee — ask when you contact them. Note: It is a messaging service: you leave a message and wait for a call back rather than speaking to someone straight away.
What It Does
Leave a message on 0800 6696 824 at any time, day or night, and one of the charity's trained advice line team will call you back, or email adviceline@ouchuk.org. OUCH (UK) also publishes information on cluster headache and oxygen therapy (including HOOF forms), a magazine and a members' forum.
Who It Helps
People with cluster headache and their families.
The page does not state a call cost or fee — ask when you contact them. Note: It is a messaging service: you leave a message and wait for a call back rather than speaking to someone straight away.
Copy link

NINDS — migraine: symptoms, diagnosis, treatment and research (United States)

https://www.ninds.nih.gov/health-information/disorders/migraine
Free to use; no fee is mentioned on the page.
What It Does
A plain-language page from the US National Institute of Neurological Disorders and Stroke on what migraine is, who is more likely to have it, how it is diagnosed and treated, keeping a headache journal, the latest research, how to find clinical trials, and organisations to contact for more information. Also available in Spanish.
Who It Helps
People with migraine and their families, in the US and elsewhere, who want reliable information from a government health body.
Free to use; no fee is mentioned on the page.
Copy link

Migraine Canada — monthly peer-led virtual migraine support groups (Canada)

https://migrainecanada.org/support-groups/
The page does not state a fee — ask when you contact them. Note: Each meeting is limited to 20 participants with a waitlist, and sign-up links are only sent by community email.
What It Does
Peer leaders with lived experience run English-language virtual groups: a daytime group (third Thursday of the month, 12pm EST), an evening group (last Thursday, 7pm EST) and a West Coast group (last Tuesday, 7pm PST); Migraine Quebec runs French-language groups. Join the Migraine Canada community email list to get sign-up links, sent in the second week of each month.
Who It Helps
People in Canada living with migraine.
The page does not state a fee — ask when you contact them. Note: Each meeting is limited to 20 participants with a waitlist, and sign-up links are only sent by community email.
Copy link

Brain Injury & Concussion

Synapse — brain injury Information and Referral service, including help with the NDIS (Australia)

https://synapse.org.au/our-services/information-and-referral/
The page does not state a fee — ask when you contact them.
What It Does
Synapse's Information & Referral team gives specialist information and advice on managing the effects of brain injury: finding suitable services, getting into the NDIS, information about brain injury, connecting with others affected, and advocacy. Carers get information, resources and a friendly voice when things feel overwhelming. Call 1800 673 074 or send the online enquiry form.
Who It Helps
People who have or may have an acquired brain injury, their families and carers, and professionals, across Australia.
The page does not state a fee — ask when you contact them.
Copy link

Headway — find a local Headway group or branch for rehabilitation, carer support and social groups (UK)

https://www.headway.org.uk/supporting-you/in-your-area/groups-and-branches/
The page does not state a fee — ask when you contact them. Note: Services vary by area and each group is run locally; the page does not state fees — ask the group.
What It Does
A region-by-region directory and map of locally run Headway groups and branches across the UK and Channel Islands. Depending on the area, they offer brain injury rehabilitation programmes, carer support, social re-integration, community outreach and respite care. Pick your region or search the map, then contact the local group.
Who It Helps
People with a brain injury, and their families and carers, in England, Scotland, Wales, Northern Ireland and the Channel Islands.
The page does not state a fee — ask when you contact them. Note: Services vary by area and each group is run locally; the page does not state fees — ask the group.
Copy link

Headway Brain Injury Identity Card — free card explaining how your brain injury affects you (UK)

https://www.headway.org.uk/supporting-you/brain-injury-identity-card/
Free (the page says 'It is free of charge'). Note: Headway reports a backlog: applications made since June 2026 may take up to 12 weeks to process.
What It Does
A free photo card stating that you have a brain injury and how it may affect you (for example memory, speech, balance or fatigue). It is recognised by police forces, NHS staff and other services, and carries a 24-hour helpline number for criminal-law solicitors trained in brain injury. Apply online or by post with a passport-style photo and medical proof of your brain injury.
Who It Helps
Anyone in the UK aged 18 or over with a verifiable brain injury. Under-18s are pointed to the Child Brain Injury Trust's card.
Free (the page says 'It is free of charge'). Note: Headway reports a backlog: applications made since June 2026 may take up to 12 weeks to process.
Copy link

The Children's Trust Virtual ABI Team — free digital rehabilitation support for children with brain injury (UK)

https://www.thechildrenstrust.org.uk/our-services/community-support
Free (the page describes the Virtual ABI Team as a free service).
What It Does
The Virtual Acquired Brain Injury Team offers free, goal-directed digital rehabilitation support: families join a virtual goal-setting meeting, then get coaching, advice and signposting from clinicians. A long-term register offers follow-up when a child starts reception, secondary school and post-16 education. Parents, families or professionals can refer by emailing tctcommunity@thechildrenstrust.org.uk.
Who It Helps
Children and young people aged 18 and under (at referral, registered with a UK GP) with an acquired brain injury, and their families, anywhere in the UK. Hands-on community rehabilitation is only for the South East of England.
Free (the page describes the Virtual ABI Team as a free service).
Copy link

Headway Ireland — apply for brain injury rehabilitation services and family support (Ireland)

https://headway.ie/apply-for-services/
The page does not state a fee — ask when you contact them. Note: Rehabilitation services are regional and some are limited to under-65s; evidence of brain injury is needed.
What It Does
Explains who can use Headway's community brain injury rehabilitation services and how to apply. You, a family member, carer or professional can refer using the regional form; Headway acknowledges it within two weeks, checks medical records and invites you (with someone who knows you well) to an initial appointment. There is a separate form for family members. For help, call the helpline on 1800 400 478.
Who It Helps
Adults (generally 18+) with an acquired brain injury, including stroke, who are medically stable — services in Dublin and surrounding areas, the Mid West (Clare, Limerick, North Tipperary) and the South (Cork, Kerry) — and family members in all regions.
The page does not state a fee — ask when you contact them. Note: Rehabilitation services are regional and some are limited to under-65s; evidence of brain injury is needed.
Copy link

Acquired Brain Injury Ireland — On With Life programme for families and carers (Ireland)

https://www.abiireland.ie/our-services/what-we-do/on-with-life/
Free (the page describes On With Life as a free, nationwide service).
What It Does
On With Life is a free, nationwide programme of information, education, training and support for families and carers of someone with an acquired brain injury, to reduce isolation and anxiety. There is a strand for parents and carers of under-18s with peer support, and an 'On With Training and Employment' strand for family carers returning to work or study. Register using the short online form.
Who It Helps
Anyone in Ireland caring for an adult brain injury survivor; parents, carers and siblings of children and young people with an acquired brain injury.
Free (the page describes On With Life as a free, nationwide service).
Copy link

Brain Injury Association of America — find the Brain Injury Association in your state (United States)

https://biausa.org/find-bia
Free to use; no fee is mentioned on the page. Note: Some states have an independent BIA affiliate and others a BIAA state chapter; what they offer, and whether they charge, differs from state to state.
What It Does
A clickable map of BIAA's chartered state affiliates (and Puerto Rico), which give direct support and advocacy to people living with brain injury and their families. Choose your state to see the local association and its contact details. For general questions, BIAA's National Brain Injury Information Center is on 1-800-444-6443.
Who It Helps
People with a brain injury, their families, friends and professionals in the United States.
Free to use; no fee is mentioned on the page. Note: Some states have an independent BIA affiliate and others a BIAA state chapter; what they offer, and whether they charge, differs from state to state.
Copy link

BrainLine — 'Newly Diagnosed. Now What?' guide to recovery after concussion or traumatic brain injury (United States)

https://www.brainline.org/tbi-basics/newly-diagnosed-now-what
Free to use; no fee is mentioned on the page.
What It Does
BrainLine's starting point after a diagnosis gathers its key articles on what to expect after a concussion (mild TBI) or a moderate to severe brain injury, starting rehabilitation, who the rehab specialists are, and managing symptoms such as memory problems, headaches, sleep issues, sensory overload and emotional changes. It links to separate sections for caregivers and for children.
Who It Helps
People with a concussion or traumatic brain injury, their families and caregivers; includes material for veterans and service members. US-focused but readable anywhere.
Free to use; no fee is mentioned on the page.
Copy link

Brain Injury Canada — directory of provincial and local brain injury associations (Canada)

https://braininjurycanada.ca/en/brain-injury-associations/
Free to use; no fee is mentioned on the page. Note: The page says there are no brain injury associations in the territories, Prince Edward Island, Newfoundland and Labrador or New Brunswick; listed associations are independent.
What It Does
Lists provincial and community brain injury associations in Alberta, British Columbia, Manitoba, Nova Scotia, Ontario, Québec and Saskatchewan, with addresses, phone numbers and websites. These associations offer support, information, education, advocacy and programmes for people affected by acquired brain injury. Brain Injury Canada also offers free self-guided e-courses for family caregivers.
Who It Helps
People with an acquired brain injury and their families and caregivers in Canada.
Free to use; no fee is mentioned on the page. Note: The page says there are no brain injury associations in the territories, Prince Edward Island, Newfoundland and Labrador or New Brunswick; listed associations are independent.
Copy link

Concussion Awareness Training Tool (CATT) — free online concussion course for parents and caregivers (Canada)

https://cattonline.com/course/concussion-awareness-training-tool-for-parents-and-caregivers
Free (CATT says all its online modules are available in English and French, free of charge).
What It Does
A 30-minute, self-paced online course on recognising the signs of concussion, how to respond, and supporting a child's recovery and return to activity. Create a free account to save progress and get a certificate. Related CATT courses cover youth, athletes, coaches, school staff, workplaces and medical professionals.
Who It Helps
Parents and caregivers of children and teenagers; other free modules suit young people, schools, coaches and workplaces. Canadian, open online.
Free (CATT says all its online modules are available in English and French, free of charge).
Copy link

Huntington's, Ataxia, Dystonia, Tremor & Other Movement Disorders

Huntington's Australia — free HD Specialist Services for individuals and families affected by Huntington's disease (Australia)

https://huntingtonsaustralia.au/hd-services/
HD Specialist Services are free (as the page states: 'This free service is available in person or online'); counselling is 'available through your NDIS plan or on a fee-for-service basis'.
What It Does
An experienced team gives free, personalised support in person or online, including in rural and remote areas, and helps you navigate the NDIS, health and aged care systems. Specialised counselling is also available through an NDIS plan or fee-for-service, and NDIS-registered social workers through an NDIS plan. The website also lists HD clinics and support groups.
Who It Helps
Anyone in Australia affected by Huntington's disease — people who are at risk, newly diagnosed or living with HD, and their families and carers.
HD Specialist Services are free (as the page states: 'This free service is available in person or online'); counselling is 'available through your NDIS plan or on a fee-for-service basis'.
Copy link

Huntington's Disease Association — Specialist Huntington's Disease Advisers and helpline (England and Wales)

https://www.hda.org.uk/information-and-support/getting-help/specialist-huntingtons-disease-advisory-service/
The page does not state a fee — ask when you contact them. Note: Covers England and Wales only (the page links to organisations elsewhere).
What It Does
Experienced Specialist Huntington's Disease Advisers run a confidential telephone helpline, organise local support networks and carers' groups, liaise with health and social care professionals and HD clinics, advocate for the person with HD, and support end-of-life care; one adviser focuses on juvenile HD. Call 0151 331 5444, Monday to Friday 9am–5pm; interpreting through Language Line is available.
Who It Helps
Anyone affected by Huntington's disease in England and Wales — people with HD, people at risk, family members, carers, children and young people, and the professionals supporting them.
The page does not state a fee — ask when you contact them. Note: Covers England and Wales only (the page links to organisations elsewhere).
Copy link

Scottish Huntington's Association — HD Specialists providing care co-ordination and support for Huntington's families (Scotland)

https://hdscotland.org/find-support/hd-specialists/
The page does not state a fee — ask when you contact them. Note: Scotland only; for NHS Borders, Orkney, Shetland and the Western Isles the page gives a separate contact for guidance.
What It Does
HD Specialists give physical health, mental health and wellbeing support and care co-ordination to adults in a Huntington's family, including specialist assessment, symptom management, emotional support, help to plan future care and support for carers. They liaise with therapists, care homes and mental health teams and work with NHS HD Clinical Leads who run specialist clinics. Find your local team on the page.
Who It Helps
Adults in Scotland in a Huntington's family — people with symptoms, without symptoms, at risk, and carers. The charity also has youth and financial wellbeing services.
The page does not state a fee — ask when you contact them. Note: Scotland only; for NHS Borders, Orkney, Shetland and the Western Isles the page gives a separate contact for guidance.
Copy link

Ataxia UK Helpline — information, support and advice for anyone affected by ataxia (UK)

https://www.ataxia.org.uk/support-services/helpline/
The page does not state a fee — ask when you contact them. Note: Only one operator at a time and short opening hours (10.30am–2.30pm on weekdays).
What It Does
The Helpline and Advocacy Officer, working with volunteers who have lived experience of ataxia and the research team, gives support, information and advice on diagnosis, treatment and living with ataxia. Call 0800 995 6037 (Monday to Friday, 10.30am–2.30pm) or email; if the line is busy, leave a message — they aim to reply to voicemails and emails within 3 working days.
Who It Helps
Anyone in the UK affected by any type of ataxia, including people supporting a loved one with ataxia.
The page does not state a fee — ask when you contact them. Note: Only one operator at a time and short opening hours (10.30am–2.30pm on weekdays).
Copy link

Dystonia UK — map of hospitals and treatment centres across the UK that treat dystonia (UK)

https://www.dystonia.org.uk/treatment-centres
The page does not state a fee for using the map — ask each clinic about access and any costs. Note: The list is kept up to date by a volunteer, so check details with the clinic before you travel; the page does not state costs.
What It Does
Enter your postcode to find hospitals and treatment centres across the UK that offer services for people with dystonia. Entries show details such as the specialist, services offered (for example diagnosis and botulinum toxin injections) and the types of dystonia treated. The list is reviewed and updated by a volunteer, and anyone can send in updated clinic details.
Who It Helps
People in the UK with dystonia, and their families, who are looking for a movement disorder specialist or dystonia clinic near them.
The page does not state a fee for using the map — ask each clinic about access and any costs. Note: The list is kept up to date by a volunteer, so check details with the clinic before you travel; the page does not state costs.
Copy link

National Tremor Foundation — information, advice and support groups for people with essential tremor and other tremors (UK)

https://tremor.org.uk/about-us
The page does not state a fee — ask when you contact them. Note: There are only a small number of local support groups.
What It Does
The National Tremor Foundation gives help, support, advice and information to people living with all forms of tremor, including essential tremor and orthostatic tremor, whatever their age. It has a small network of volunteer-run local support groups and an official Facebook support group, and runs education sessions, including one for GPs. Contact the support groups co-ordinator through the website.
Who It Helps
People in the UK living with any form of tremor, of any age, and their families and carers.
The page does not state a fee — ask when you contact them. Note: There are only a small number of local support groups.
Copy link

Huntington's Disease Association of Ireland — helpline, family support officer, support groups and equipment loan (Ireland)

https://www.huntingtons.ie/supports
The crisis line is a Freefone number; the page does not state fees for other services — ask when you contact them. Note: Support groups meet only in Dublin, Cork, Limerick and Mayo/Roscommon; the page does not state fees — ask when you contact them.
What It Does
HDAI offers a national helpline, a Family Support Officer who can talk to or meet family members, support group meetings in Dublin, Cork, Limerick and Mayo/Roscommon, carers' workshops, an annual information meeting and respite weekend, an assistance fund for families in need and loans of specialised seating and equipment. There is a Freefone number for families in crisis: 1800 393939.
Who It Helps
People in Ireland with Huntington's disease, people at risk, carers and family members, and professionals who work with them.
The crisis line is a Freefone number; the page does not state fees for other services — ask when you contact them. Note: Support groups meet only in Dublin, Cork, Limerick and Mayo/Roscommon; the page does not state fees — ask when you contact them.
Copy link

Huntington's Disease Society of America — HDSA Centers of Excellence for team-based Huntington's care (United States)

https://hdsa.org/find-help/clinical-care-services/hdsa-centers-of-excellence/
No fee is mentioned for using the list; the page does not state what care at the centres costs — ask each centre about fees and insurance cover. Note: Centres are in 37 states and DC only; the page does not state costs, so ask each centre about fees and insurance cover.
What It Does
HDSA Centers of Excellence offer team-based care from neurologists, psychiatrists, social workers, therapists, counsellors and other professionals experienced with families affected by Huntington's disease. There are 60 Centers and 9 Partner Sites covering 37 states plus the District of Columbia; select a centre on the page for its address, contact details and website.
Who It Helps
People with Huntington's disease and their families in the United States.
No fee is mentioned for using the list; the page does not state what care at the centres costs — ask each centre about fees and insurance cover. Note: Centres are in 37 states and DC only; the page does not state costs, so ask each centre about fees and insurance cover.
Copy link

National Ataxia Foundation — map of Ataxia Centers of Excellence and specialty clinics (United States and worldwide)

https://www.ataxia.org/neurologists-and-specialty-clinics/
No fee is mentioned for using the map; the page does not state the cost of care — ask each clinic about fees and insurance cover. Note: Not a complete list of providers; the page does not state costs, so ask each clinic about fees, referral and insurance cover.
What It Does
NAF's map lists NAF Ataxia Centers of Excellence (which pass a full application process), Ataxia Centers and Movement Disorder Centers known to have experience with ataxia, mostly in the US with some clinics in other countries. If there is no clinic in your state, use NAF's printable list of neurologists familiar with ataxia in each state.
Who It Helps
People with any type of ataxia and their families looking for a knowledgeable clinic or neurologist, mainly in the United States.
No fee is mentioned for using the map; the page does not state the cost of care — ask each clinic about fees and insurance cover. Note: Not a complete list of providers; the page does not state costs, so ask each clinic about fees, referral and insurance cover.
Copy link

International Essential Tremor Foundation — free information and local essential tremor support groups (United States and worldwide)

https://essentialtremor.org/resources/living-with-et/support-groups/
Educational information is free ('to all who request it, at no charge'); the page does not state a fee for support groups — ask the group leader. Note: Groups are volunteer-run and exist only in some areas.
What It Does
IETF support groups are informal, self-managed groups where people with essential tremor meet and share information; choose your location on the page to see if there is one near you, or start one. The IETF also runs a closed Facebook discussion group, a directory of movement disorder specialists, and provides educational information to anyone who asks, free of charge.
Who It Helps
People with essential tremor and their families, mainly in the United States; the foundation serves the essential tremor community worldwide.
Educational information is free ('to all who request it, at no charge'); the page does not state a fee for support groups — ask the group leader. Note: Groups are volunteer-run and exist only in some areas.
Copy link

Dystonia Medical Research Foundation — Find a Dystonia Doctor directory (United States)

https://dystonia-foundation.org/find-a-doctor/
No fee is mentioned for using the directory; the page does not state the cost of care — ask each provider about fees and insurance cover. Note: Listing is voluntary and not an endorsement by the DMRF; check each provider's experience, fees and insurance cover.
What It Does
A searchable directory of physicians and other healthcare providers with experience or interest in treating dystonia, showing their location and the types of dystonia they treat. Providers choose to be listed, and the DMRF suggests asking about the team's training and how many people with dystonia they treat.
Who It Helps
People with dystonia and their families looking for a movement disorder specialist or other provider, mainly in the United States.
No fee is mentioned for using the directory; the page does not state the cost of care — ask each provider about fees and insurance cover. Note: Listing is voluntary and not an endorsement by the DMRF; check each provider's experience, fees and insurance cover.
Copy link

Huntington Society of Canada — Family Services: information, short-term counselling, referral and advocacy for families affected by HD (Canada)

https://www.huntingtonsociety.ca/family-service-offerings/
The page does not state a fee — ask when you contact them. Note: Counselling is short-term.
What It Does
The Family Services team offers information and education about Huntington disease, short-term counselling, resource counselling and referral, individual advocacy with service providers, and support groups, working with local HD, movement disorder and genetics clinics. It also educates hospital, long-term care, home care and community staff. Contact the team through the Family Services team list or contact form.
Who It Helps
Anyone in Canada affected by Huntington disease — people at risk, gene-positive or gene-negative, living with HD, carers, spouses and family members — and health or community care workers.
The page does not state a fee — ask when you contact them. Note: Counselling is short-term.
Copy link

Muscle, Nerve & Spinal Cord Conditions

Muscular Dystrophy Queensland Infoline — free information and guidance on living with a neuromuscular condition (Queensland)

https://mdqld.org.au/services/infoline/
Free (the page says 'Our free Infoline'). Note: For people in Queensland; business hours only (Monday to Friday, 8.30am to 4.30pm).
What It Does
Knowledgeable staff answer questions on daily life with muscular dystrophy or a similar neuromuscular condition — accessing the NDIS, finding services, other funded supports and free charitable programs, sport and recreation — and support families at diagnosis, life transitions and as needs increase. Phone 1800 676 364 or email on weekdays, 8.30am to 4.30pm, or use the enquiry form.
Who It Helps
Anyone in Queensland seeking information or support about a neuromuscular condition — people living with one, their families, and professionals supporting them.
Free (the page says 'Our free Infoline'). Note: For people in Queensland; business hours only (Monday to Friday, 8.30am to 4.30pm).
Copy link

Spinal Cord Injuries Australia — Peer and Family Support from people with lived experience (New South Wales, Australia)

https://scia.org.au/living-with-a-disability/navigating-life-with-a-disability/
The page does not state a fee — ask when you contact them. Note: Hospital-based peer support is at John Hunter, Royal North Shore, Prince of Wales and Royal Rehab Ryde in NSW.
What It Does
SCIA's Peer and Family Support team, all with lived experience of spinal cord injury, visit NSW spinal injury units weekly for one-to-one conversations, co-run education sessions and social confidence activities, and support families. After discharge they hold social catch-ups (NSW and WA) and offer telehealth if you live further away. Call 1800 819 775 or email info@scia.org.au.
Who It Helps
People with a new or long-standing spinal cord injury, young people, and family members and carers — mainly in New South Wales.
The page does not state a fee — ask when you contact them. Note: Hospital-based peer support is at John Hunter, Royal North Shore, Prince of Wales and Royal Rehab Ryde in NSW.
Copy link

Muscular Dystrophy Association of NZ Fieldwork Service — free one-on-one support at home, by phone or video (New Zealand)

https://www.mda.org.nz/fieldwork-service
Free (the page says the service is 'provided completely free of charge' and membership is free).
What It Does
Fieldworkers based in regional branches give person-centred support: help navigating Whaikaha, ACC and Health NZ, support at assessments and appointments, advice on equipment, home modifications and transport, help with school and work transitions, and regular check-ins, local groups and carer support. Join MDANZ (free) online to start.
Who It Helps
MDANZ members — anyone living with a diagnosed neuromuscular condition covered by MDANZ — and their whānau, parents, partners and primary carers, anywhere in New Zealand.
Free (the page says the service is 'provided completely free of charge' and membership is free).
Copy link

New Zealand Spinal Trust — Peer and Whānau Support after spinal cord impairment (New Zealand)

https://nzspinaltrust.org.nz/new-to-sci/peer-and-whanau-support/
The page does not state a fee — ask when you contact them. Note: The team is based at Burwood Spinal Unit; people in the Auckland region or at the Auckland Spinal Rehabilitation Unit are pointed to Spinal Support NZ. No fee is stated.
What It Does
Peer supporters who use wheelchairs themselves, and whānau supporters with experience of caring for a family member, help newly injured people and their families from hospital onwards. A community peer team works in communities across New Zealand. Use the 'Connect to Peer & Whānau Support' form to get in touch.
Who It Helps
People with a spinal cord impairment (from injury or illness) and their whānau, especially those going through Burwood Spinal Unit in Christchurch.
The page does not state a fee — ask when you contact them. Note: The team is based at Burwood Spinal Unit; people in the Auckland region or at the Auckland Spinal Rehabilitation Unit are pointed to Spinal Support NZ. No fee is stated.
Copy link

Muscular Dystrophy UK helpline — free information and emotional support for muscle wasting conditions (UK)

https://www.musculardystrophyuk.org/support/services/speak-to-us/
Free (the page says the helpline 'provides free information and emotional support'). Note: For people aged over 18; the page lists other services for under-18s. If you leave a message out of hours, the team aims to reply within five working days.
What It Does
A trained helpline team gives information, advice and emotional support on living with a muscle wasting or weakening condition: newly diagnosed questions, caring, local services, housing and home adaptations, benefits, grants and financial help, and employment. Call 0800 652 6352, Monday to Friday 10am to 5pm, or email info@musculardystrophyuk.org.
Who It Helps
Adults aged over 18 living with a muscle wasting or weakening condition, and their family members, carers and friends.
Free (the page says the helpline 'provides free information and emotional support'). Note: For people aged over 18; the page lists other services for under-18s. If you leave a message out of hours, the team aims to reply within five working days.
Copy link

myaware — National Support Coordinators by phone and email, with free lifetime membership (UK)

https://www.myaware.org/email-and-telephone-support
Free lifetime membership (as the membership page states); no fee is mentioned for the support team, and myaware says its online events are free to join. Note: The coordinators are not counsellors; replies can take up to five working days at busy times.
What It Does
myaware's National Support Coordinators offer a listening ear and guidance through life with myasthenia, help you understand your condition and point you to resources, and signpost you to other services when needed. Ring 01332 290 219 (Monday to Friday, 9am to 5pm) to arrange a call, or email. Members can also join free online meetings, including sessions for the newly diagnosed.
Who It Helps
People who have, or are awaiting a diagnosis of, myasthenia gravis or another myasthenia such as LEMS, and their relatives and carers, in the UK.
Free lifetime membership (as the membership page states); no fee is mentioned for the support team, and myaware says its online events are free to join. Note: The coordinators are not counsellors; replies can take up to five working days at busy times.
Copy link

Inflammatory Neuropathies UK (formerly GAIN) — 1-to-1 peer support for Guillain–Barré syndrome, CIDP and MMN (UK)

https://www.inflammatoryneuropathies.uk/peer-support
The page does not state a fee — ask when you contact them. Note: Peer support from volunteers with lived experience, not medical advice.
What It Does
You are matched with a trained volunteer who has lived experience of an inflammatory neuropathy, chosen by condition, age, gender, location and your preferences, and can talk by phone, video call or messages. Contact the office on 01529 469910 or 0800 374803, or email hello@inflammatoryneuropathies.uk. The charity also runs online and in-person Get Togethers and offers personal grants.
Who It Helps
People in the UK affected by Guillain–Barré syndrome, CIDP, MMN or another inflammatory neuropathy, and those close to them.
The page does not state a fee — ask when you contact them. Note: Peer support from volunteers with lived experience, not medical advice.
Copy link

Spinal Injuries Association — local support coordinators who live with spinal cord injury (UK)

https://www.spinal.co.uk/get-support/support-coordinators-in-your-area/
Free (SIA says you can join for free for a lifetime of advice and support). Note: The county search does not list Scottish areas.
What It Does
SIA's regional support coordinators all live with spinal cord injury. From when you are newly injured, they give practical advice on continence, safe transfers, work, family life, driving and holidays, and connect you to other services — members can be referred by their coordinator to SIA's free specialist counselling (self-referral is closed for now). Select your county to find your coordinator; membership is free.
Who It Helps
People with a spinal cord injury and their families in England, Wales, Northern Ireland, the Channel Islands and the Isle of Man.
Free (SIA says you can join for free for a lifetime of advice and support). Note: The county search does not list Scottish areas.
Copy link

Back Up — one-to-one mentoring from people with spinal cord injury, including young people and families (UK)

https://www.backuptrust.org.uk/support-for-you/mentoring/talk-mentor-spinal-cord-injury
The page does not state a fee — ask when you contact them.
What It Does
Back Up matches you with a trained mentor who has a spinal cord injury, usually with a similar injury level and age, and you arrange calls at times that suit you both. There is a dedicated mentoring service for children and young people, and family mentors for relatives. Register online; professionals can also refer.
Who It Helps
Anyone with a spinal cord injury at any age or stage, children and young people with SCI, and family members, across the UK.
The page does not state a fee — ask when you contact them.
Copy link

Spinal Cord Injury BC — free Peer Program with meetups, events and peer connection (British Columbia, Canada)

https://sci-bc.ca/peer-program/
Free (the page says membership is free).
What It Does
Peer Program Coordinators who live with spinal cord injury run weekly and monthly meetups around British Columbia, online events, and more than 300 events a year, and can connect you with someone with a similar injury or situation. Family members are welcome. The toll-free InfoLine and online InfoCentre help with jobs, housing, health and recreation. Membership is free.
Who It Helps
People in British Columbia with a spinal cord injury or related physical disability — newly injured or long-term — and their families and friends.
Free (the page says membership is free).
Copy link

Muscular Dystrophy Ireland Family Support Service — support workers around the country for neuromuscular conditions (Ireland)

https://www.mdi.ie/family-support-services
The page does not state a fee — ask when you contact MDI. Note: MDI's membership page lists the Family Support Programme among the services for members.
What It Does
Six Family Support Workers and Community Support Workers around the country give practical information and a listening ear, and help with counselling and bereavement services, personal assistance, entitlements such as carer's allowance and medical cards, education and employment, disability equipment, transport, housing, and new diagnoses. For more information, phone MDI on +353 01 6236414.
Who It Helps
People with neuromuscular conditions in Ireland and their families, including parents.
The page does not state a fee — ask when you contact MDI. Note: MDI's membership page lists the Family Support Programme among the services for members.
Copy link

Spinal Injuries Ireland — peer support for people with spinal cord injury and their families (Ireland)

https://spinalinjuries.ie/service/peer-support-from-sii/
The page does not state a fee — ask when you contact them.
What It Does
Trained peer volunteers, who live with a spinal cord injury or have supported a loved one with one, offer a listening ear and guidance from the time of injury onwards. There is separate peer support for family members. Request it with the online form, call 085 8584300 (Mon–Fri 9am–5.30pm), or email. Community Outreach Officers also give local support and advice.
Who It Helps
People in Ireland with a spinal cord injury, and their family members and friends.
The page does not state a fee — ask when you contact them.
Copy link

MDA Care Center Network — find a multidisciplinary neuromuscular clinic at over 150 US hospitals (United States)

https://www.mda.org/care/mda-care-centers
No fee is mentioned for using the finder; ask the care centre about costs and insurance. Note: MDA services are available only in the US. A finder only — contact the care centre to arrange an appointment.
What It Does
Search the map or list to find an MDA Care Center or affiliate near you. Located at more than 150 health care institutions across the US, they offer expert multidisciplinary care for muscular dystrophy, ALS and other neuromuscular diseases, access to clinical trials, and connection with MDA. The MDA Resource Center (1-833-275-6321) can help you get started.
Who It Helps
People in the United States living with muscular dystrophy, ALS or another neuromuscular disease covered by MDA, and their families.
No fee is mentioned for using the finder; ask the care centre about costs and insurance. Note: MDA services are available only in the US. A finder only — contact the care centre to arrange an appointment.
Copy link

Myasthenia Gravis Foundation of America — MGFA Helpline with professional counsellors, seven days a week (United States)

https://myasthenia.org/mgfa-helpline/
The page does not state a fee — ask when you call. Note: The helpline cannot give medical advice. Hours are US Eastern Time.
What It Does
Professional counsellors answer questions about living with myasthenia gravis, give emotional support and guide you to resources: finding a qualified neuromuscular specialist, support groups, treatment information and help with MG emergencies or management. Call 1-833-647-8764 — weekdays 8am to 10pm and weekends 9am to 9pm Eastern. Ask about the Wellness Navigation program for more intensive help.
Who It Helps
People with myasthenia gravis, newly diagnosed or living with it for some time, and their families and caregivers.
The page does not state a fee — ask when you call. Note: The helpline cannot give medical advice. Hours are US Eastern Time.
Copy link

Charcot–Marie–Tooth Association — find a CMTA Center of Excellence for expert CMT care (United States and other countries)

https://cmtausa.org/cmta-centers-of-excellence/
No fee is mentioned for using the finder; ask each clinic about costs and referral rules. Note: CMTA recognises individual CMT specialists after review but does not operate or accredit the clinics; contact the clinic directly.
What It Does
Search by country and US state for a CMTA Center of Excellence — multidisciplinary clinics led by CMT specialists who provide comprehensive care for Charcot–Marie–Tooth disease and link to research. Centres are listed in the United States, Canada, the United Kingdom, Ireland, Australia, Belgium, Germany, Italy and Thailand.
Who It Helps
People with Charcot–Marie–Tooth disease and their families looking for a specialist clinic, in the US and the other countries listed.
No fee is mentioned for using the finder; ask each clinic about costs and referral rules. Note: CMTA recognises individual CMT specialists after review but does not operate or accredit the clinics; contact the clinic directly.
Copy link

Reeve Foundation Peer & Family Support Program — free peer mentor matching for people with paralysis (United States)

https://www.christopherreeve.org/todays-care/get-support/get-a-peer-mentor/
Free (the page says 'We offer free mentoring to anyone seeking help').
What It Does
Request a peer mentor online, by phone or by scheduling a call. A Peer & Family Support Coordinator chats with you about your needs, then matches you with a mentor who lives with paralysis or cares for someone who does, considering level of injury or function, cause of paralysis, age and interests. You and your mentor decide how often to talk. Coordinators are on 1-800-539-7309, Mon–Fri 9am–6pm ET.
Who It Helps
People who are newly paralysed or have lived with paralysis (including spinal cord injury) for years, and their family members and caregivers. US-based programme.
Free (the page says 'We offer free mentoring to anyone seeking help').
Copy link

Muscular Dystrophy Canada — register as a client for support specialists, equipment funding and referrals (Canada)

https://muscle.ca/support-services/who-we-help/register-as-a-client/
Registering is free (the page says 'Registering is easy and free!'); no fee is mentioned for Support Specialist help. Note: Equipment funding varies by province and does not cover items under $200 or reimburse purchases made before approval.
What It Does
Registering gives you personalised support from a Support Specialist where you live (emotional support, guidance, referrals and help navigating daily life), access to the equipment programme that helps cover assistive devices and mobility equipment, referrals to financial assistance, and education about research and clinical trials. Complete the registration form or call 1-800-567-2873.
Who It Helps
People in Canada (citizens, landed immigrants or refugees) with a likely or confirmed diagnosis of one of the many neuromuscular disorders the charity supports, and their families.
Registering is free (the page says 'Registering is easy and free!'); no fee is mentioned for Support Specialist help. Note: Equipment funding varies by province and does not cover items under $200 or reimburse purchases made before approval.
Copy link

Cerebral Palsy, Tourette Syndrome, FND, Brain Tumours & Rare Conditions

RARE Portal (Rare Voices Australia) — rare disease directory with Australian support organisations (Australia)

https://www.rareportal.org.au/rare-disease-directory/
The page does not state a fee — the directory is open to use on the website. Note: Not a complete list of the 7,000+ rare diseases, and pages are still being added. Rare Voices Australia says it does not necessarily endorse the support groups listed.
What It Does
A national directory of rare diseases, including many rare neurological conditions, with information pages being added and links to Australian support organisations and personal stories. Search by condition; the wider RARE Portal also covers disability support, mental health and services by state or territory.
Who It Helps
Australians living with a rare disease, their families and carers, and the health professionals who support them.
The page does not state a fee — the directory is open to use on the website. Note: Not a complete list of the 7,000+ rare diseases, and pages are still being added. Rare Voices Australia says it does not necessarily endorse the support groups listed.
Copy link

Mark Hughes Foundation — Brain Cancer Care Coordinator nurses for patients and families (Hunter New England and Mid North Coast, NSW)

https://markhughesfoundation.com.au/nurses/
The page does not state a fee — ask the coordinator or your treating team. Note: Only for patients in the Hunter New England and Mid North Coast health districts; the nurses work set days, listed on the page.
What It Does
The foundation funds adult and paediatric Brain Cancer Care Coordinator nurse positions in the Hunter New England and Mid North Coast health districts, who give personalised nursing care and support to patients and families from diagnosis onwards. The page lists each nurse's location, phone, email and working days. Every patient also receives an MHF patient pack with information and a diary.
Who It Helps
Adults and children with brain cancer, and their families, treated in the Hunter New England and Mid North Coast health districts of NSW.
The page does not state a fee — ask the coordinator or your treating team. Note: Only for patients in the Hunter New England and Mid North Coast health districts; the nurses work set days, listed on the page.
Copy link

Cerebral Palsy Alliance — what is cerebral palsy: plain and Easy English guides and video series (Australia)

https://cerebralpalsy.org.au/cerebral-palsy/
Free to use; no fee is mentioned on the page.
What It Does
An introduction to cerebral palsy — what it is, the types, how it affects people, signs, assessments and treatments — with free Easy English and Plain English guides to download, guides in 17 other languages, and a video series in which researchers and people with lived experience explain CP. From here you can also find CPA's services and support for each age group.
Who It Helps
People with cerebral palsy, parents and families (including those waiting for or new to a diagnosis), and anyone wanting to understand CP. Australian; readable anywhere.
Free to use; no fee is mentioned on the page.
Copy link

Rare Disorders NZ — directory of rare disorder support groups (New Zealand)

https://raredisorders.org.nz/groups/
The page does not state a fee — the directory is open to use; each group sets its own terms. Note: Lists only groups in the RDNZ support group collective — not an exhaustive list of the 7,000+ rare disorders.
What It Does
A searchable directory of the support groups that work with Rare Disorders NZ — start typing a condition or group name to filter the list. If you cannot find a group for your disorder, RDNZ asks you to get in touch as it may be able to support you in other ways; it also has a downloadable guide to setting up a support group.
Who It Helps
People in New Zealand living with a rare disorder, including rare neurological conditions, and their whānau.
The page does not state a fee — the directory is open to use; each group sets its own terms. Note: Lists only groups in the RDNZ support group collective — not an exhaustive list of the 7,000+ rare disorders.
Copy link

Brain Tumour Support NZ — free Brain Box support kit with patient guides for newly diagnosed people and carers (New Zealand)

https://www.braintumoursupport.org.nz/support/brain-box
Free (the page says 'the box won't cost you a cent'). Note: For people living in New Zealand with a primary brain tumour and their carers. One box per residential address, NZ addresses only; allow 7–14 days for delivery. Contents may vary.
What It Does
Order a free Brain Box online: a support kit containing the charity's seven Patient Guides to help you navigate diagnosis and treatment, practical items and small gifts. A Brain Box for Kidz, made with Frankie to the Rescue, includes an education guide for schools plus toys, puzzles and games for a child with a brain tumour.
Who It Helps
Anyone living in New Zealand who has been diagnosed with a primary brain tumour, or is caring for someone who has, including parents of children with a brain tumour.
Free (the page says 'the box won't cost you a cent'). Note: For people living in New Zealand with a primary brain tumour and their carers. One box per residential address, NZ addresses only; allow 7–14 days for delivery. Contents may vary.
Copy link

Cerebral Palsy Society of New Zealand — membership with grants, funding programmes and a freephone (New Zealand)

https://cerebralpalsy.org.nz/about-us/membership/
Membership is $10 per year (as the page states). Note: Grants and funding programmes are for members only, and a New Zealand diagnosis is required to join.
What It Does
Membership of the Society gives people with cerebral palsy access to individual and academic grants and funding programmes (such as getMoving and getStructured), subsidised social events and a magazine. The freephone 0800 503 603 (Mon–Fri 9am–3pm) gives information, advice and support on all aspects of CP. Apply online with proof of a CP diagnosis from a New Zealand medical professional.
Who It Helps
People with cerebral palsy (Hōkai Nukurangi) living in New Zealand and their families.
Membership is $10 per year (as the page states). Note: Grants and funding programmes are for members only, and a New Zealand diagnosis is required to join.
Copy link

FND Action — FiND Services directory of NHS services for functional neurological disorder (UK)

https://www.fndaction.org.uk/find-services/
No fee is mentioned for using the directory; the listed NHS services are reached by referral. Note: The directory is still being built and lists only some services; most listed services accept referrals only from GPs or specialists.
What It Does
A growing directory of NHS services for people with FND in England, Scotland, Wales and Northern Ireland, showing what each service offers, who it accepts referrals from, age criteria and contact details. FND Action is gathering information from NHS and other health bodies across the UK and adds regional details as the work develops.
Who It Helps
People with functional neurological disorder in the UK, their families, and the GPs and clinicians who refer them.
No fee is mentioned for using the directory; the listed NHS services are reached by referral. Note: The directory is still being built and lists only some services; most listed services accept referrals only from GPs or specialists.
Copy link

Genetic Alliance UK — A–Z directory of support charities for genetic, rare and undiagnosed conditions (UK)

https://geneticalliance.org.uk/membership/a-z-members-directory/
The page does not state a fee — the directory is open to use; each charity sets its own terms. Note: Lists member organisations only, so not every condition has a group here — email the alliance if yours is missing.
What It Does
An alphabetical directory of the alliance's member charities and support groups for genetic, rare and undiagnosed conditions, including rare neurological conditions. If you are looking for support for a specific condition and cannot see a relevant organisation, the alliance asks you to email it so it can help.
Who It Helps
People in the UK living with a genetic, rare or undiagnosed condition, and their families and carers.
The page does not state a fee — the directory is open to use; each charity sets its own terms. Note: Lists member organisations only, so not every condition has a group here — email the alliance if yours is missing.
Copy link

SWAN UK (Genetic Alliance UK) — free support community for families of children with an undiagnosed genetic condition (UK)

https://geneticalliance.org.uk/support-and-information/swan-uk-syndromes-without-a-name/
Free (as the service states: 'SWAN UK community membership is completely free'). Note: For families of children and young adults up to 25 only. In a crisis, the page points you to Samaritans on 116 123.
What It Does
The UK's dedicated support community for families affected by a 'syndrome without a name' — a genetic condition so rare it often remains undiagnosed. Members get online forums, virtual coffee meet-ups and online events, and information from the SWAN UK team. Register online for free membership.
Who It Helps
Families of children and young adults up to 25 with a suspected but undiagnosed genetic condition — for example developmental delay with no known reason, or negative genetic test results — in the UK.
Free (as the service states: 'SWAN UK community membership is completely free'). Note: For families of children and young adults up to 25 only. In a crisis, the page points you to Samaritans on 116 123.
Copy link

The Brain Tumour Charity — up to eight free counselling sessions by phone or webcam (UK)

https://www.thebraintumourcharity.org/living-with-a-brain-tumour/get-support/free-counselling-service/
Free (the page says 'up to eight free counselling sessions'). Note: Waiting list of about 7 to 8 weeks. Not for people in crisis, with complex mental health needs, or already in counselling elsewhere; individual sessions only.
What It Does
Up to eight free one-to-one sessions with a qualified counsellor, online by webcam or by telephone, Monday to Friday 9am to 5pm, to talk about the impact a brain tumour diagnosis has had on your life. Complete the self-referral form and book an initial assessment with the Support Team, who then match you with a counsellor.
Who It Helps
Adults aged 18 or over living in the UK who have been diagnosed with a brain tumour, or whose loved one has, at any stage including newly diagnosed or bereaved.
Free (the page says 'up to eight free counselling sessions'). Note: Waiting list of about 7 to 8 weeks. Not for people in crisis, with complex mental health needs, or already in counselling elsewhere; individual sessions only.
Copy link

brainstrust brain tumour hub — search UK brain tumour support services and resources by postcode (UK)

https://braintumourhub.org.uk/
No fee is mentioned for searching the hub; the services it lists set their own terms.
What It Does
A searchable database of verified brain tumour support resources for patients and caregivers. Search by postcode to find support near you or a loved one, or filter by diagnosis stage, support for children, teens or adults, carers' resources, end-of-life care and living with a brain tumour; it also links to brain tumour clinical trials.
Who It Helps
People in the UK with a brain tumour, their caregivers and families, and professionals supporting them.
No fee is mentioned for searching the hub; the services it lists set their own terms.
Copy link

Tourettes Action Helpdesk — confidential support by live chat, email and callback for people affected by Tourette syndrome (UK)

https://www.tourettes-action.org.uk/9-helpdesk.html
The page does not state a fee — ask when you contact them. Note: Not a medical or emergency service — it gives no diagnoses or medication advice.
What It Does
The Helpdesk gives confidential, impartial information and support about Tourette syndrome. Use live chat on the website (Monday to Friday, 10am–3pm), send the contact form, or email help@tourettes-action.org.uk to request a callback; they aim to reply within 48 hours. It does not give diagnoses or advice on medication, but can point you to a list of specialist consultants.
Who It Helps
People living with Tourette syndrome in the UK, their friends and family, and others seeking information such as teachers and employers.
The page does not state a fee — ask when you contact them. Note: Not a medical or emergency service — it gives no diagnoses or medication advice.
Copy link

Cerebral Palsy Scotland — Support Service for information, advice and access to therapy (Scotland)

https://cerebralpalsyscotland.org.uk/what-we-do/support-service/
The page does not state a fee — ask when you contact them.
What It Does
The Support Coordinator is the first point of contact for people with cerebral palsy and their families: a listening ear, answers to questions, help to access therapy and signposting to other organisations, in person, by phone or by email. They hear from parents waiting for or new to a diagnosis and from adults diagnosed later in life. Call 0141 352 5000, Mon–Fri 9am–5pm, or email info@cpscot.org.uk.
Who It Helps
Children and adults with cerebral palsy and their families in Scotland, including parents whose child may have CP.
The page does not state a fee — ask when you contact them.
Copy link

NINDS — functional neurologic disorder (FND): symptoms, diagnosis and treatment (United States)

https://www.ninds.nih.gov/health-information/disorders/functional-neurologic-disorder
Free to use; no fee is mentioned on the page.
What It Does
Explains FND as a condition caused by changes in how brain networks work rather than in brain structure; its symptoms, such as seizure-like episodes and movement problems; how it is diagnosed; the main treatments (physical therapy and psychotherapy); current research; how to find clinical trials; and organisations for more information. Also in Spanish.
Who It Helps
People with FND and their families, in the US and elsewhere, who want reliable information from a government health body.
Free to use; no fee is mentioned on the page.
Copy link

NORD Rare Disease Database — information on rare diseases, incl. rare neurological conditions (United States)

https://rarediseases.org/rare-diseases/
The page does not state a fee — the database is open to search on the website. Note: Entries without a NORD report can be technical — NORD suggests talking them through with your healthcare provider.
What It Does
Search NORD's database of rare diseases by name. NORD Rare Disease Reports describe symptoms, causes, diagnosis, treatments, clinical trials and support resources, including patient advocacy organisations; other entries draw on reliable outside sources. If you cannot find what you need, NORD's Information and Resource Services team can help by phone or email.
Who It Helps
People with a rare or suspected rare disease, their families and carers. Written for a US audience but open to read anywhere.
The page does not state a fee — the database is open to search on the website. Note: Entries without a NORD report can be technical — NORD suggests talking them through with your healthcare provider.
Copy link

GARD (NIH Genetic and Rare Diseases Information Center) — rare disease information and help from information specialists (United States)

https://rarediseases.info.nih.gov/
Free (as the service states: 'providing free access to reliable and easy-to-understand information'). Note: General information, not a substitute for advice from a health care provider. Questions go through a web form, with replies in 2 to 10 business days.
What It Does
Free, easy-to-understand information on thousands of rare diseases, help to find support and connect with patient organisations, and individual help from GARD Information Specialists, who can help you find or understand information, navigate the diagnostic journey and discover experts or clinical studies. Ask a question through the online contact form; replies take 2–10 business days.
Who It Helps
People with a rare or genetic disease, including those still seeking a diagnosis, and their families and carers; mainly for the US.
Free (as the service states: 'providing free access to reliable and easy-to-understand information'). Note: General information, not a substitute for advice from a health care provider. Questions go through a web form, with replies in 2 to 10 business days.
Copy link

American Brain Tumor Association CareLine — free information, support groups and mentor matching for brain tumours (United States)

https://www.abta.org/about-brain-tumors/social-emotional-support/
Free (the page says 'Our Support Services are 100% free for patients and caregivers'). Note: ABTA cannot answer complex medical questions or give medical advice. Opening hours are in US Central Time.
What It Does
CareLine staff help with brain tumour information, treatment and care, finding a treatment centre, social and emotional support, information for the newly diagnosed and caregivers, financial assistance resources and clinical trials. The same page links to virtual and in-person support groups, patient and caregiver mentors and free webinars. Call 800-886-2282 or use the online contact form.
Who It Helps
People with a brain tumour and their caregivers in the United States (mentor matching is for adults in the US or Canada).
Free (the page says 'Our Support Services are 100% free for patients and caregivers'). Note: ABTA cannot answer complex medical questions or give medical advice. Opening hours are in US Central Time.
Copy link

United Cerebral Palsy — Information and Referral service to find local programmes (United States)

https://ucp.org/resources/explore-our-services/
The page does not state a fee — ask when you contact them. Note: Services are delivered by independent local UCP affiliates, which differ by area.
What It Does
UCP's Information and Referral service helps you find programmes and services near you, from assistive technology, education and employment to health, housing, transport and support for parents and families. Fill in the online form with your location and the kind of help you need, call (866) 827-1692, or search UCP's Resource Library.
Who It Helps
People with cerebral palsy and other disabilities, and their families, mainly in the United States.
The page does not state a fee — ask when you contact them. Note: Services are delivered by independent local UCP affiliates, which differ by area.
Copy link

Ontario Federation for Cerebral Palsy — free system navigation, independent living and AAC support (Ontario, Canada)

https://www.ofcp.ca/planning
Free (the page lists 'COST FREE'); personalised navigation is for OFCP members, and lifetime membership for people with CP is $10. Note: Ontario only; personalised navigation requires OFCP membership.
What It Does
OFCP's Support & Navigation team gives personalised help with accessing services, funding and social connections, guidance on housing and models of care for independent living, and augmentative and alternative communication (AAC) support and training. Complete the online request form to set up a first meeting with a facilitator.
Who It Helps
People living with cerebral palsy in Ontario, and their families.
Free (the page lists 'COST FREE'); personalised navigation is for OFCP members, and lifetime membership for people with CP is $10. Note: Ontario only; personalised navigation requires OFCP membership.
Copy link

neurosymptoms.org — a patient's guide to functional neurological disorder by neurologist Prof Jon Stone (Worldwide)

https://neurosymptoms.org/en/
Free (the About page says 'the site and all content is free'). Note: Information only — Prof Stone cannot reply to patient emails or accept NHS referrals from outside Scotland; the site's FND Formulation Tool is temporarily unavailable.
What It Does
Explains FND symptoms (such as functional seizures, limb weakness, tremor, dizziness and cognitive symptoms), how and why they happen, investigations and treatment — physiotherapy, occupational, psychological and speech and language therapy — plus managing relapses, family and work, with videos, fact sheets and a free app. Available in several languages.
Who It Helps
People with FND anywhere in the world, their families, and the health professionals who look after them.
Free (the About page says 'the site and all content is free'). Note: Information only — Prof Stone cannot reply to patient emails or accept NHS referrals from outside Scotland; the site's FND Formulation Tool is temporarily unavailable.
Copy link

EURORDIS — find a rare disease patient organisation by disease and country (Europe and worldwide)

https://www.eurordis.org/information-support/find-a-patient-organisation/
The page does not state a fee — the search is open to use on the website. Note: Lists EURORDIS members only. EURORDIS cannot answer medical questions, diagnose or make referrals.
What It Does
Search EURORDIS's 1,000+ member patient organisations from 74 countries by disease and country, or find the European federation for your rare disease. The page also links to Orphanet's directory of patient organisations for a wider search.
Who It Helps
People living with a rare disease, including rare neurological conditions, and their families — mainly in Europe, but members come from 74 countries, including Australia and Canada.
The page does not state a fee — the search is open to use on the website. Note: Lists EURORDIS members only. EURORDIS cannot answer medical questions, diagnose or make referrals.
Copy link

Orphanet — rare disease encyclopaedia and directories of patient organisations and expert centres (Worldwide)

https://www.orpha.net/en
The page does not state a fee — the information and directories are open to search on the website. Note: An information resource and set of directories, not a support service — contact the patient organisation or expert centre listed for your condition.
What It Does
A rare disease knowledge base with an inventory, classification and encyclopaedia of rare diseases, and directories of patient organisations, expert centres, laboratories offering diagnostic tests, and research projects, clinical trials, registries and biobanks. Start from the 'Rare diseases', 'Patient organisations' or 'Expert centres and Networks' menu; the site is in several European languages.
Who It Helps
People with a rare disease, including rare neurological conditions, their families and health professionals. Orphanet's consortium covers 40 countries in Europe and around the world.
The page does not state a fee — the information and directories are open to search on the website. Note: An information resource and set of directories, not a support service — contact the patient organisation or expert centre listed for your condition.
Copy link

Carers, Equipment, Driving & Daily Living

Dementia Support Australia — Staying at Home: free respite retreats, webinars and sessions for dementia carers (Australia)

https://www.dementia.com.au/dementia-carers-page/services/staying-at-home
Free (as the service states: 'Free for carers and people living with dementia'). Note: Retreats and information sessions are held on set dates in particular places; if none is near you, the page lists other providers of the program in each state.
What It Does
A carer wellbeing and dementia respite program to help carers support a person with dementia to stay at home for longer. Options are two-night overnight respite retreats for carers and the person with dementia (meals and accommodation provided), a four-week online webinar series 'It takes a village', and short in-person information sessions. Register your interest for upcoming dates on the page.
Who It Helps
Family carers of a person living with dementia in Australia; the person with dementia can attend the retreats and the information sessions.
Free (as the service states: 'Free for carers and people living with dementia'). Note: Retreats and information sessions are held on set dates in particular places; if none is near you, the page lists other providers of the program in each state.
Copy link

Austroads 'Assessing Fitness to Drive' — national driving standards for neurological conditions (Australia)

https://austroads.gov.au/publications/assessing-fitness-to-drive/ap-g56/neurological-conditions
Free to use; no fee is mentioned for the online version (hard copies can be bought from Austroads). Note: Written mainly for health professionals. Your state or territory licensing authority makes the decision and may issue a conditional licence. The 2022 standards are under review.
What It Does
Section 6 of Australia's national driver medical standards covers dementia, seizures and epilepsy, and other conditions including Parkinson's, MS, stroke, TIA, head injury, neuromuscular conditions, cerebral palsy and brain tumours. Drivers must report conditions that may affect driving to their state or territory licensing authority, which usually asks their doctor for an assessment.
Who It Helps
Drivers in Australia with a neurological condition, their families, and the doctors who assess them.
Free to use; no fee is mentioned for the online version (hard copies can be bought from Austroads). Note: Written mainly for health professionals. Your state or territory licensing authority makes the decision and may issue a conditional licence. The 2022 standards are under review.
Copy link

NDIS — how to check if you are eligible for the National Disability Insurance Scheme (Australia)

https://www.ndis.gov.au/applying/eligibility-requirements/how-check-your-eligibility
Free to use; no fee is mentioned on the page. Note: Your complete application must be received before you turn 65; people 65 or over are pointed to aged care. The NDIS says it is updating its website for new legislation.
What It Does
Step-by-step checks for joining the NDIS: identity documents, the age limit, residence, and the disability requirements — a permanent impairment that substantially affects daily life and is likely to need NDIS support for life. It suggests collecting evidence such as assessments and reports before you apply, and to contact the NDIS early if you are turning 65 soon.
Who It Helps
Australian citizens, permanent residents and Protected Special Category visa holders living in Australia who are younger than 65 when their application is received.
Free to use; no fee is mentioned on the page. Note: Your complete application must be received before you turn 65; people 65 or over are pointed to aged care. The NDIS says it is updating its website for new legislation.
Copy link

Dementia Carers Count — free Carer Support Line: counselling, benefits advice and practical support for dementia carers (UK)

https://dementiacarers.org.uk/what-we-do/dementia-carer-support-services/carer-support-line/
Free (as the service states: 'Free personal support for dementia carers'). Note: Weekday office hours only; out of hours you can leave a voice message or use the form for a call back.
What It Does
A specialist team of qualified counsellors, dementia advisors and benefits advisors offers free personal support to people caring for someone with dementia — counselling, benefits advice and practical help. Call 0800 652 1102, Monday to Friday 9am–5pm, or complete the online form and they will call you back. The charity also runs small online peer support groups for dementia carers.
Who It Helps
People caring for a family member or friend with dementia.
Free (as the service states: 'Free personal support for dementia carers'). Note: Weekday office hours only; out of hours you can leave a voice message or use the form for a call back.
Copy link

DVLA / GOV.UK — check if a health condition affects your driving, incl. epilepsy, dementia, Parkinson's, MS and stroke (England, Scotland and Wales)

https://www.gov.uk/health-conditions-and-driving
Free to use; no fee is mentioned on the page. Note: You can be fined up to £1,000 if you do not tell DVLA about a condition that affects your driving. People in Northern Ireland should use the separate process linked on GOV.UK.
What It Does
The official guide to which medical conditions you must tell DVLA about, with an A–Z of driving guidance for conditions including epilepsy and seizures, dementia, Parkinson's, MS, motor neurone disease, stroke and TIA, brain injury, brain tumours, Huntington's, myasthenia gravis and Guillain-Barré syndrome. Car and motorcycle licence holders can check and report a condition online.
Who It Helps
Drivers licensed by DVLA (England, Scotland and Wales) who have a medical condition that may affect driving, and their families. Northern Ireland has a different way to report.
Free to use; no fee is mentioned on the page. Note: You can be fined up to £1,000 if you do not tell DVLA about a condition that affects your driving. People in Northern Ireland should use the separate process linked on GOV.UK.
Copy link

Neurological Alliance of Scotland — guides for unpaid carers of people with neurological conditions (Scotland)

https://www.scottishneurological.org.uk/information-and-resources/
The page does not state a fee — the guides can be downloaded from the page. Note: Scotland-specific (for example Self-directed Support). The Alliance is an umbrella body, so for one-to-one support contact the member charity for the condition.
What It Does
Downloadable guides for people caring for someone with a neurological condition — 'What to expect when you are new to caring', 'from advocacy services' and 'when planning ahead' — plus Self-directed Support factsheets and an A–Z of neurological conditions (updated March 2026) that signposts to member charities and local and national carers' organisations.
Who It Helps
Unpaid carers of people with neurological conditions in Scotland, and the professionals who support them.
The page does not state a fee — the guides can be downloaded from the page. Note: Scotland-specific (for example Self-directed Support). The Alliance is an umbrella body, so for one-to-one support contact the member charity for the condition.
Copy link

Brain & Spine Foundation 'Neuro Carers' — monthly online group for carers of people with neurological conditions (UK)

https://www.brainandspine.org.uk/support-for-you/peer-support-groups/neuro-carers/
The page does not state a fee — ask when you register your interest. Note: Online only, once a month, and you need to register first. It is a peer social group.
What It Does
A social group on Zoom where adults who care for someone with a neurological condition can meet and talk openly with others who understand. It meets on the second Tuesday of every month, 10:30–11:30am, led by a facilitator who is also a carer. Register your interest using the form on the page.
Who It Helps
Unpaid adult carers — friends or relatives of an adult or child who cannot manage alone because of a neurological condition. Run online by the UK charity Brain & Spine Foundation.
The page does not state a fee — ask when you register your interest. Note: Online only, once a month, and you need to register first. It is a peer social group.
Copy link

The Alzheimer Society of Ireland — free family carer training courses, in person and online (Ireland)

https://alzheimer.ie/about-dementia/family-carer-training/
Free (as the service states: 'Courses are free of charge, but a voluntary donation is welcome'). Note: Places are limited and by invitation; after applying you join a waiting list until a place is offered.
What It Does
Seven-week courses for family carers: 'Insights into Dementia' (in person, one evening session a week in counties nationwide) and 'Home Based Care – Home Based Education' (fully online, at your own pace), covering looking after yourself, communication, responsive behaviours, safety at home, personal care and nutrition. An eight-week online follow-on course covers later-stage care. Apply online or by post.
Who It Helps
Family carers — anyone who gives regular, informal care to a spouse, relative, friend or neighbour with dementia — in Ireland.
Free (as the service states: 'Courses are free of charge, but a voluntary donation is welcome'). Note: Places are limited and by invitation; after applying you join a waiting list until a place is offered.
Copy link

National Driver Licence Service — medical fitness to drive and how to report a condition (Ireland)

https://www.ndls.ie/medical-fitness.html
Free to use; no fee is mentioned on the page. Note: The page does not list specific conditions — ask your GP whether your neurological condition must be notified. Driving once you know you are not fit to do so is an offence.
What It Does
Explains the legal duty to tell the National Driver Licence Service, and your insurer, about any long-term or permanent illness or injury that may affect safe driving. If your GP confirms your condition must be notified, you have a medical report form completed and apply for a change of medical details online or at an NDLS centre.
Who It Helps
Drivers in Ireland who have, or develop, a long-term or permanent illness or injury that may affect safe driving, and their families.
Free to use; no fee is mentioned on the page. Note: The page does not list specific conditions — ask your GP whether your neurological condition must be notified. Driving once you know you are not fit to do so is an offence.
Copy link

Social Security Compassionate Allowances — faster disability decisions for ALS, young-onset Alzheimer's, FTD, MSA, PSP and more (United States)

https://www.ssa.gov/compassionateallowances/conditions.htm
Free to use; no fee is mentioned on the page. Note: US only. Compassionate Allowances is not a separate benefit: it is how Social Security identifies SSDI and SSI claims for listed conditions so they can be decided faster.
What It Does
Social Security's list of conditions that, by definition, meet its disability standard, so claims can be decided faster. It includes many neurological conditions, such as ALS, young-onset Alzheimer's disease, frontotemporal dementia, Lewy body dementia, multiple system atrophy, progressive supranuclear palsy, corticobasal degeneration, CJD, adult-onset Huntington disease and glioblastoma.
Who It Helps
People in the US applying for Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI) who have a listed condition, and the family members helping them.
Free to use; no fee is mentioned on the page. Note: US only. Compassionate Allowances is not a separate benefit: it is how Social Security identifies SSDI and SSI claims for listed conditions so they can be decided faster.
Copy link

AT3 Center — find your state's Assistive Technology Act program for equipment loans, demos and reuse (United States)

https://at3center.net/state-at-programs/
The page does not state a fee — ask your state program about costs when you contact them. Note: US only. Each state program sets its own services and terms, and some entries were last updated years ago — check the state program's own website.
What It Does
A directory of the Assistive Technology Act program in every US state and territory, with addresses, phone numbers, websites and contacts for device loans, device demonstrations, device reuse and financial loans. Choose your state to find who to ask about trying or borrowing equipment before you buy.
Who It Helps
People in the US with a disability, including a neurological condition, and their families and carers who need assistive technology.
The page does not state a fee — ask your state program about costs when you contact them. Note: US only. Each state program sets its own services and terms, and some entries were last updated years ago — check the state program's own website.
Copy link

Assistive Devices Program — help paying for wheelchairs, communication aids and other equipment (Ontario, Canada)

https://www.ontario.ca/page/assistive-devices-program
Depending on the equipment, ADP pays 75% of the approved price, up to 75% of an approved maximum, or a grant towards the cost, and you pay the rest; people on Ontario Works, ODSP or ACSD can get 100% of the approved amount or the full grant. Note: Ontario only. It does not cover repairs, batteries, bath and shower aids or home renovations such as ramps, or equipment already funded by WSIB (or by Veterans Affairs Canada for Group A veterans).
What It Does
An Ontario government program that helps pay for customised equipment and supplies for long-term physical disabilities, including mobility aids, communication aids, respiratory and ventilator equipment, and visual aids. Follow the link for your device type to see how to qualify, apply and find a vendor.
Who It Helps
Ontario residents with a valid Ontario health card and a physical disability needing the equipment for 6 months or longer, who meet the device's clinical criteria. Income is not considered.
Depending on the equipment, ADP pays 75% of the approved price, up to 75% of an approved maximum, or a grant towards the cost, and you pay the rest; people on Ontario Works, ODSP or ACSD can get 100% of the approved amount or the full grant. Note: Ontario only. It does not cover repairs, batteries, bath and shower aids or home renovations such as ramps, or equipment already funded by WSIB (or by Veterans Affairs Canada for Group A veterans).
Copy link

Dementia Singapore — free caregiver support groups in English, Mandarin and Malay (Singapore)

https://dementia.org.sg/csg/
Free (as the service states: 'Caregiver Support Group sessions are free of charge, unless otherwise stated'). Note: Runs on set dates; register at least two weeks before. A complimentary Eldersit for the person with dementia may be available — ask the helpline.
What It Does
Two-hour sessions with a guest speaker talk and a sharing time, where caregivers learn about dementia care, swap practical tips and meet others in a similar situation. Sessions run on Zoom or at its Bendemeer and Tiong Bahru venues, on topics such as managing responsive behaviours and communication. Register at least two weeks ahead online or through the Dementia Helpline on 6377 0700.
Who It Helps
Family caregivers of people living with dementia in Singapore.
Free (as the service states: 'Caregiver Support Group sessions are free of charge, unless otherwise stated'). Note: Runs on set dates; register at least two weeks before. A complimentary Eldersit for the person with dementia may be available — ask the helpline.
Copy link

Research Registers, Brain Donation & Trial Finders

StepUp for Dementia Research — national register matching volunteers to dementia studies (Australia)

https://www.stepupfordementiaresearch.org.au/
Free (as the service states: 'completely free for all volunteers, researchers and users'). Note: A matching service, not a dementia support line; how many studies you are offered depends on where you live and what is recruiting.
What It Does
You register online (5–15 minutes) or by phone with a few questions about yourself or the person you are registering; the system then matches you to ethically approved dementia and ageing studies, and researchers from a matching study contact you. Registering does not commit you to taking part, and you can withdraw at any time.
Who It Helps
Anyone aged 18 or over living in Australia, with or without dementia; carers can register a person with dementia on their behalf.
Free (as the service states: 'completely free for all volunteers, researchers and users'). Note: A matching service, not a dementia support line; how many studies you are offered depends on where you live and what is recruiting.
Copy link

Australian Epilepsy Research Register — join to take part in social research surveys about epilepsy (Australia)

https://epilepsyfoundation.org.au/research-initiatives/australian-epilepsy-research-register/
Free to join (the register's brochure, linked from the page, says 'It is free to join the research register'); taking part in any study is optional. Note: It is not a medical or clinical research register — taking part mainly means answering surveys about the social effects of epilepsy.
What It Does
A register of people with epilepsy and their family or carers who agree to be contacted about social and psychological research. All members are invited to the Australian Epilepsy Longitudinal Survey, held every three years, which the Foundation uses to argue for better policies and health services. Join through the Registration Form in the page's menu.
Who It Helps
Adults (18+) living with epilepsy anywhere in Australia, and their carers and family members; a parent or guardian can register on behalf of a child with epilepsy.
Free to join (the register's brochure, linked from the page, says 'It is free to join the research register'); taking part in any study is optional. Note: It is not a medical or clinical research register — taking part mainly means answering surveys about the social effects of epilepsy.
Copy link

Brain Foundation — where you can still donate your brain for research, state by state (Australia)

https://brainfoundation.org.au/support-us/donate-your-brain/
The page does not state a fee — ask the brain bank when you contact them. Note: Victorian and SA brain banks are not taking new donors; there are no active donor organisations in Tas, WA, Qld, ACT or NT (Qld, ACT and Tas residents can ask the Brain and Mind Centre).
What It Does
A guide to the brain banks that accept donations in Australia — the MS Research Australia Brain Bank, and in NSW the Sydney Brain Bank, NSW Brain Tissue Resource Centre, Brain and Mind Centre and Australian Sports Brain Bank — with each bank's contacts and focus. It notes the national Australian Brain Bank Network stopped operating in 2019.
Who It Helps
Australians with or without a brain disorder, disease or injury who are thinking about brain donation, and their families and doctors.
The page does not state a fee — ask the brain bank when you contact them. Note: Victorian and SA brain banks are not taking new donors; there are no active donor organisations in Tas, WA, Qld, ACT or NT (Qld, ACT and Tas residents can ask the Brain and Mind Centre).
Copy link

Brain Foundation — current Australian research studies seeking volunteers with brain conditions (Australia)

https://brainfoundation.org.au/research-participant/
The page does not state a fee for taking part; some studies pay participants, cover travel costs or offer entry into a gift-card draw — check each listing. Note: The Brain Foundation lists studies but does not run them; each study has its own eligibility, location and closing date.
What It Does
A list of current calls for volunteers from Australian universities and research institutions studying brain diseases, disorders and injuries, plus ongoing opportunities. Each listing gives who can take part, what is involved, recruitment dates, ethics approval and the researchers' contact details — contact the researchers directly if you are interested.
Who It Helps
People in Australia living with a brain disease, disorder or injury; some studies also seek people without the condition.
The page does not state a fee for taking part; some studies pay participants, cover travel costs or offer entry into a gift-card draw — check each listing. Note: The Brain Foundation lists studies but does not run them; each study has its own eligibility, location and closing date.
Copy link

Sydney Brain Bank (NeuRA) — brain donor programs you can enrol in, incl. Parkinson's, dementia, MND and Huntington's (NSW, Australia)

https://sbb.neura.edu.au/donors/brain_donor_programs
No cost to donate: the Sydney Brain Bank FAQ says the brain banks cover transport and donation costs; other funeral costs remain with the family. Note: No direct enrolment or donations at the time of death — you must enrol beforehand through a program. If you live outside NSW, call 02 9399 1707 to discuss options.
What It Does
Lists the NSW research programs through which people register in advance as future brain donors — for Parkinson's and related conditions, frontotemporal dementia and Alzheimer's, motor neurone disease, Huntington's disease, healthy ageing (aged 60 and over) and more — with each program's contact. Contact the program that matches your situation.
Who It Helps
People in NSW who are eligible for one of the listed programs, including healthy volunteers and relatives of enrolled donors.
No cost to donate: the Sydney Brain Bank FAQ says the brain banks cover transport and donation costs; other funeral costs remain with the family. Note: No direct enrolment or donations at the time of death — you must enrol beforehand through a program. If you live outside NSW, call 02 9399 1707 to discuss options.
Copy link

MiNDAUS — the Australian MND Registry: free, voluntary registry and personal health record (Australia)

https://www.mndaustralia.org.au/research/mindaus-registry/
Free (the page says it 'is free, quick and easy to join').
What It Does
A secure, voluntary national registry for people with motor neurone disease. Joining creates a personal MND health record you or your carer can update and share with your health team, adds your data to research on MND in Australia, and can show whether you may suit a clinical trial. Sign up on the registry website or through a participating MND clinic.
Who It Helps
All people diagnosed with MND in Australia; carers or family members can be invited to update details on the person's behalf.
Free (the page says it 'is free, quick and easy to join').
Copy link

MS Australia Brain Bank — register as a brain donor to help MS research (Australia)

https://msbrainbank.org.au/donate-tissue/
No fee is mentioned on the page. Note: Registrations from SA, the NT and WA are not accepted at present. You must register in advance ('at death' donations are not accepted), and donation will not go ahead against your family's wishes.
What It Does
Register to donate your brain and spinal cord after death to help researchers study MS, find markers for early detection and develop treatments. Call 1300 672 265 or use the online form to receive the MS Brain Donor Information and Consent Kit, and talk your decision through with your family. People without MS can also register so researchers can compare tissue.
Who It Helps
Adults (over 18) with MS, and people without MS such as family members and friends, living in Queensland, NSW, the ACT, Victoria or Tasmania.
No fee is mentioned on the page. Note: Registrations from SA, the NT and WA are not accepted at present. You must register in advance ('at death' donations are not accepted), and donation will not go ahead against your family's wishes.
Copy link

Neurological Foundation Human Brain Bank (University of Auckland) — how to register as a brain donor (New Zealand)

https://www.brainbank.ac.nz/faq/
The page does not state a fee — ask when you contact the Brain Bank. Note: Brain removal must happen within 24 hours of death, so family need to contact the Brain Bank soon after. Some donations cannot be accepted, e.g. with infectious disease or rapid-onset dementia.
What It Does
Explains how to offer your brain for research to the Neurological Foundation Human Brain Bank: fill in the form on the page to request a donor information pack, discuss your wish with your family, then return the donation forms so your offer is on record. Brains from people with and without neurological conditions are needed.
Who It Helps
People in New Zealand, with or without a neurological condition, who are considering brain donation, and their whānau.
The page does not state a fee — ask when you contact the Brain Bank. Note: Brain removal must happen within 24 hours of death, so family need to contact the Brain Bank soon after. Some donations cannot be accepted, e.g. with infectious disease or rapid-onset dementia.
Copy link

Join Dementia Research — national register matching volunteers to dementia studies (UK)

https://www.joindementiaresearch.nihr.ac.uk/
Free to use; no fee is mentioned on the page. Note: For people living in Northern Ireland, consent cannot be given on their behalf; they must agree to be registered themselves.
What It Does
Register online or by phone and the service matches you to dementia studies you may be able to join — online, nationally or near you. You review your matches and decide whether to take part; there is no obligation. Studies include memory tests, questionnaires, brain scans, lifestyle programmes and drug trials. You can also manage an account for someone you support, with their consent or power of attorney.
Who It Helps
Any UK resident over the age of 18, with or without dementia, including carers and supporters of people with dementia.
Free to use; no fee is mentioned on the page. Note: For people living in Northern Ireland, consent cannot be given on their behalf; they must agree to be registered themselves.
Copy link

Alzheimer's Research UK — Dementia Research Infoline: questions about dementia and taking part in research (UK)

https://www.alzheimersresearchuk.org/about-us/contact-us/dementia-research-infoline/
The page does not state a fee for the service; calls to 0300 111 5111 cost the same as calls to 01 or 02 numbers (included in free call packages; mobiles likely cost more). Note: Staff are not medically trained and do not give advice, counselling or guidance on dementia care.
What It Does
An information line, by phone (0300 111 5111), email or post, that answers questions about dementia symptoms, causes, diagnosis, risk factors and treatments, explains the research behind media headlines, tells you about chances to take part in research studies, and signposts other organisations. Open 9am–5pm Monday to Friday (not bank holidays); out of hours leave a message; they aim to reply in three working days.
Who It Helps
Anyone with questions about dementia or dementia research, including people who want to take part in studies.
The page does not state a fee for the service; calls to 0300 111 5111 cost the same as calls to 01 or 02 numbers (included in free call packages; mobiles likely cost more). Note: Staff are not medically trained and do not give advice, counselling or guidance on dementia care.
Copy link

Be Part of Research (NIHR) — find and sign up for health research studies, incl. neurological conditions (UK)

https://bepartofresearch.nihr.ac.uk/
Free (as the service states: 'Be Part of Research is a free service'). Note: You must be 18 or over to use the service, and each study has its own eligibility requirements, such as age, medical history or gender.
What It Does
A free service to search health and care research studies taking place across the UK by condition or location, and to register so you are sent details of studies that match the health conditions you are interested in. Check each study's 'who can take part' section before applying.
Who It Helps
Adults aged 18 and over in England, Northern Ireland, Scotland and Wales — people with the condition being studied, carers, and people with no health condition.
Free (as the service states: 'Be Part of Research is a free service'). Note: You must be 18 or over to use the service, and each study has its own eligibility requirements, such as age, medical history or gender.
Copy link

Human Tissue Authority — how to donate your brain for research, with contacts for UK brain banks (UK)

https://www.hta.gov.uk/guidance-public/body-organ-and-tissue-donation/brain-donation
Free to use; no fee is mentioned on the page. Note: Arrange it in advance with your chosen brain bank — recording the wish only in a Will is not recommended. Banks may not accept every donation, e.g. if the death is referred to a coroner.
What It Does
The Human Tissue Authority's guide to donating your brain and spinal cord for research, with contact details for UK brain banks including the UK Parkinson's Disease Society and MS Society tissue banks, the Epilepsy Society brain bank, Queen Square, Oxford, Cambridge, Manchester, Newcastle and London banks, and Brains for Dementia Research. It explains consent and why to arrange donation in advance.
Who It Helps
People with or without a brain condition who are thinking about donating their brain to research, and their families. The banks listed are in England, Wales and Northern Ireland.
Free to use; no fee is mentioned on the page. Note: Arrange it in advance with your chosen brain bank — recording the wish only in a Will is not recommended. Banks may not accept every donation, e.g. if the death is referred to a coroner.
Copy link

Parkinson's UK Brain Bank — pledge to donate your brain to Parkinson's research (UK)

https://www.parkinsons.org.uk/research/discover/brain-bank
The page does not state any costs — ask the Brain Bank when you contact them. Note: Pledging is done through forms on the Imperial College website; the page does not state any costs — ask the Brain Bank if unsure.
What It Does
The Brain Bank at Imperial College London collects brain tissue from people with and without Parkinson's and sends it to researchers worldwide. To pledge, fill in the forms on the Imperial College website, or contact the Brain Bank on 020 7594 9732 to have forms posted or ask questions. The page links to a step-by-step guide on the Imperial website for families on what to do when a donor dies.
Who It Helps
People with or without Parkinson's who want to pledge their brain to Parkinson's research after they die, and their families.
The page does not state any costs — ask the Brain Bank when you contact them. Note: Pledging is done through forms on the Imperial College website; the page does not state any costs — ask the Brain Bank if unsure.
Copy link

National Institute on Aging — find an Alzheimer's Disease Research Center near you (United States)

https://www.nia.nih.gov/health/clinical-trials-and-studies/find-alzheimers-disease-research-center
Free to use; no fee is mentioned on the page. Note: A directory of research centers; the page does not describe clinical services, so ask each center what it offers.
What It Does
A state-by-state directory of the Alzheimer's Disease Research Centers (ADRCs) that NIA funds at major medical and academic institutions, with each center's website, email and information line. Researchers at these centers work on improved diagnosis and care and on ways to treat or prevent Alzheimer's and other dementias; contact your nearest center to ask about its studies.
Who It Helps
People in the United States, and their families, who want to learn about or take part in Alzheimer's and dementia research near them.
Free to use; no fee is mentioned on the page. Note: A directory of research centers; the page does not describe clinical services, so ask each center what it offers.
Copy link

NINDS — taking part in clinical trials and studies on neurological disorders (United States)

https://www.ninds.nih.gov/health-information/clinical-trials-and-studies
Free to use; the page says clinical trials and studies are free to take part in, and some provide transport or reimburse you for your time. Note: Talk with your doctor about which studies suit you. NIH says its websites are changing, and existing pages are being redirected to matching pages on the new NIH.gov where possible.
What It Does
NINDS explains what clinical trials and studies on the brain and nervous system involve, the safety protections for participants, the typical steps of a trial and participant stories, and points you to ClinicalTrials.gov to search by location, neurological disorder or keyword. People with and without neurological conditions are needed.
Who It Helps
People in the US with or without a neurological condition, of all ages and backgrounds, who are thinking about taking part in research, and their families.
Free to use; the page says clinical trials and studies are free to take part in, and some provide transport or reimburse you for your time. Note: Talk with your doctor about which studies suit you. NIH says its websites are changing, and existing pages are being redirected to matching pages on the new NIH.gov where possible.
Copy link

CurePSP Brain Donation Assistance Program — guidance and up to $1,000 towards brain donation costs for PSP, CBD and MSA research (United States)

https://www.psp.org/brain-donation-program
The Mayo Clinic Brain Bank does not charge for its neuropathology evaluation or report. The pathologist or diener who removes and ships the tissue may charge — typically $500 to $2,000, paid by the family — and the program may reimburse up to $1,000 (as the page states). Note: The family must find a pathologist to remove and ship the tissue (CurePSP cannot help with that step) and pay any fees; tissue should ideally be collected within 12–24 hours of death.
What It Does
CurePSP's program guides families through brain donation to the Mayo Clinic Brain Bank in Jacksonville, Florida, with a downloadable packet of forms. The next of kin receives a detailed report, usually two to four months later, that can confirm a diagnosis of PSP, CBD, MSA or related findings. The program may reimburse up to $1,000 of donation costs.
Who It Helps
People living with PSP, CBD or MSA and their families who are considering brain donation for research.
The Mayo Clinic Brain Bank does not charge for its neuropathology evaluation or report. The pathologist or diener who removes and ships the tissue may charge — typically $500 to $2,000, paid by the family — and the program may reimburse up to $1,000 (as the page states). Note: The family must find a pathologist to remove and ship the tissue (CurePSP cannot help with that step) and pay any fees; tissue should ideally be collected within 12–24 hours of death.
Copy link

Fox Trial Finder — match to recruiting Parkinson's studies by location and health history (Worldwide)

https://www.michaeljfox.org/trial-finder
The page does not state a fee; no login is needed to search. Note: It lists studies run by others, pulled from ClinicalTrials.gov; check each study's details with its team before joining.
What It Does
A trial-matching tool from The Michael J. Fox Foundation: answer a few questions and it shows recruiting studies that fit your location and health history, including virtual studies you can join from home. No login is needed; you can sign up to be emailed about future matches. You choose your language first; the tool offers several, including English, Spanish, French and Russian.
Who It Helps
People with Parkinson's or related conditions (MSA, PSP, CBD), people without Parkinson's who could be control volunteers, and family members or care teams searching for them.
The page does not state a fee; no login is needed to search. Note: It lists studies run by others, pulled from ClinicalTrials.gov; check each study's details with its team before joining.
Copy link
Important Disclaimer
This directory is provided for educational and informational purposes only and does not constitute medical advice, diagnosis, or treatment. Always consult with a qualified healthcare professional before making changes to your medication regimen or starting any new therapy.

This document does not guarantee the legitimacy, quality, or suitability of any business, organization, or practitioner listed within. The inclusion of any listing does not constitute an endorsement, recommendation, or verification of credentials. All organizations listed are independent entities over which the creators of this directory have no control or oversight.

This directory is intended to be used as a starting point and reference for the reader to conduct their own research, exercise their own judgment, and apply their own discretion before engaging with any listed organization or professional. Readers are strongly encouraged to independently verify credentials, read reviews, check licensing, and confirm current pricing and availability directly with each organization before committing to any services.

Costs, availability, contact details, and services may change at any time without notice. Information was accurate to the best of our knowledge at the time of publication.

About Notbroken.io: this directory and the accompanying Breathe, Calm, Sleep, Move, Eat, Track and Build tools were created by Nathan Leary, who runs and updates them. How each tool works, its safety notes, the privacy policy and terms of use are at notbroken.io/about, notbroken.io/privacy and notbroken.io/terms. The tools are general wellness aids, not medical devices, and Track is a personal journal that never gives medication advice.

If you are in crisis: Please contact your local emergency services immediately, or reach out to one of the following helplines:

International: Chapter 02 of this directory lists free helplines by situation and country; elsewhere use Find A Helpline — findahelpline.com
United States: 988 Suicide & Crisis Lifeline (call or text 988) • Crisis Text Line (text HOME to 741741)
United Kingdom: Samaritans — 116 123 (free, 24/7)
Canada: Talk Suicide Canada — 988 (call or text, 24/7)
Australia: Lifeline — 13 11 14 (24/7) • Beyond Blue — 1300 22 4636
New Zealand: Need to Talk? — 1737 (free, 24/7)
Europe: European Emergency Number — 112
India: iCall — 9152987821 • Vandrevala Foundation — 1860 2662 345
Singapore: Samaritans of Singapore — 1-767 (24/7)
Japan: TELL Lifeline — 03-5774-0992

No matches found

Nothing matched . Try broadening your search — remove a filter, use a single keyword, describe what you need in a sentence, or browse by a condition, a place, or a type of support.

Suggest a resource