Finding a Supportive FND Community
A practical guide to finding people who understand - near you or online
Living with Functional Neurological Disorder can be lonely. Symptoms may change from one day to the next. Friends and family may care deeply but still struggle to understand. Sometimes even the people treating you have limited experience of FND.
A good community cannot replace clinical care, but it can make the journey feel less solitary. It can offer recognition, practical ideas and the relief of not having to explain everything from the beginning.
The important word is good. The right community should leave you feeling more informed and less alone, not frightened, pressured or responsible for somebody else’s recovery.
Start here: what kind of support do you need?
Choose the route that feels closest to what you need today.
I am looking for… | A useful first step |
People who understand FND | Join a moderated peer-support meeting through FND Hope International or a recognised organisation in your country |
A group near my town or city | Use the country directory below, then ask the national organisation for its current regional list |
Support without travelling | Look for an online meeting rather than relying only on social-media discussion groups |
Help as a partner, parent or carer | Choose a group specifically for carers or care partners |
Support for a teenager or young adult | Use an age-specific group with clear safeguarding arrangements |
People who understand functional seizures | Look for a dedicated functional-seizure group within an established FND organisation |
A way to explain patterns to my clinical team | Consider an FND symptom and appointment tool such as NeuroLog |
You do not need to join everything. One safe, well-run group is more valuable than ten noisy ones.
Worldwide and online
FND Hope International
Best for: a first point of contact, online meetings and groups for particular needsWhere: international; onlineRun by: FND Hope International, founded by patient advocate Bridget MildonWebsite: fndhope.org
FND Hope is one of the largest international FND charities. Its programme changes over time, but has included online groups for people new to FND, people with functional seizures, young adults, teenagers, men, LGBTQIA+ members, carers and care partners. It also runs informal activities such as book groups and creative sessions.
This is a sensible place to begin if your country has no visible local organisation or if travel is difficult. Check the FND Hope events calendar for the current programme and time zone before registering.
FND Hope country branches
FND Hope also has country services in the United States, United Kingdom, Canada and Australia. Use the country links in the directory below because services and meeting times differ by branch.
FND Society
Best for: finding professional information and specialist clinical networksWhere: internationalRun by: the Functional Neurological Disorder Society, a multidisciplinary professional societyWebsite: fndsociety.org
This is not a patient support group. It is useful when you are looking for professional education, conferences or clinicians working in FND. A professional network and a peer community do different jobs; many people need both.
NeuroLog
Best for: recording symptoms, patterns and information for appointments; sharing selected information with a support network
Where: app-based; available internationally subject to platform availability
Created by: Steve Painter (creator attribution and preferred profile link to be confirmed before publication)
Website: info.neurolog.app/web
NeuroLog is not a community in the usual sense, but it can help make a personal support network work better. Users can record symptoms and create a private “family” of trusted people or members of a care team. That may be useful when speech, memory, fatigue or fluctuating symptoms make it difficult to explain what has been happening.
It is a practical support tool, not a diagnostic service or a substitute for medical care.
Find support by country
Group names, meeting links and volunteers can change. For that reason, this directory links first to the organisation responsible for the service rather than copying private meeting links that may soon become out of date.
South Africa
FND What Now?
Best for: South African peer support, patient and carer resources, FND awareness, and stronger communication between people with FND and healthcare professionals
Where: Based in Cape Town, with an expanding nationwide reach and free online support-group meetings
Founded and led by: Audrey Bart, FND advocate, public speaker and trained support-group leader
Website: FND – What Now? NPC
Contact: fndwhatnow@gmail.com
FND – What Now? NPC is a registered, patient-led South African non-profit supporting people living with Functional Neurological Disorder and those who care for them.
Audrey Bart established the original support group in November 2022 after completing the South African Depression and Anxiety Group’s Support Group Leader Training Programme. Drawing on her lived experience of FND and her background in biomedical technology, clinical laboratories and research, Audrey brings together peer support, public awareness and practical education.
The organisation runs free, theme-based online support-group meetings that may include talks, presentations, guest speakers and interviews. It also provides patient and carer resources, an FND Support Group Handbook and a clinician toolkit developed specifically for the South African context.
FND – What Now? works to improve recognition of FND within South African healthcare and to build more compassionate communication between patients and professionals. It is also a recognised South African partner of NeuroLog, connecting its national community with a wider international FND initiative.
Visit fndwhatnow.com for current meeting details, membership requirements, events and contact information.
United Kingdom
FND Action
Best for: UK information, peer support, carers, younger people and regional connections
Where: United Kingdom; online and regional services
Run by: FND Action, a UK registered charity
Website: fndaction.org.uk
Find a group: FND Action community groups
FND Action offers information and community support for people with FND. Its services have included online support groups, regional community groups, carer information and a young-person hub. Start with the community-groups page because local provision can change.
FND Hope UK
Best for: UK-wide online support, wellbeing activities, carers and educational resources
Where: United Kingdom; mainly online
Run by: FND Hope UK
Website: fndhope.org.uk
Support services: FND Hope UK support services
FND Hope UK provides support and information, including online activities and resources such as the myFND app. Check its current services page for eligibility, registration and meeting dates.
United States
FND Hope US
Best for: national peer support, condition-specific meetings and caregiver support
Where: United States; online groups open across states
Run by: FND Hope US
Website: fndhope.org
Current meetings: FND Hope events
The international calendar includes US-oriented and cross-border groups. Look at the description of each meeting rather than assuming every event is open to every location or age group.
If you want something in your state or city, ask the national team whether there is a recognised local contact. Avoid sharing detailed medical information in a public group while searching.
Canada
FND Hope Canada
Best for: Canadian peer connection and online support
Where: Canada; national and online
Run by: FND Hope Canada
Website: FND Hope International
Current meetings: FND Hope events
FND Hope’s calendar has included Canada and joint USA/Canada meetings. Check the individual event listing for time zone, registration and audience. For provincial or city-based support, ask the branch for the latest local contact rather than relying on an old directory entry.
Australia
FND Australia Support Services
Best for: Australian information, lived-experience support and practical resources
Where: Australia; check the organisation for current state and online coverage
Run by: FND Australia Support Services
Website: fndaus.org.au
FND Australia Support Services provides FND-focused information and support. Its public work also includes lived-experience content associated with Detty, an advocate, former nurse and person living with FND. Use the organisation’s website for the current contact route and programme.
FND Hope Australia
Best for: national information, advocacy and connection to FND Hope services
Where: Australia; national
Run by: FND Hope Australia
Website: fndhope.org.au
Aotearoa New Zealand
FND Functional Neurological Disorder in Aotearoa/NZ
Best for: peer connection within Aotearoa New Zealand
Where: nationwide online Facebook group
Run by: community administrators; individual administrator names are not listed here because they should be confirmed with the group
Contact: fndactionaotearoa@gmail.com
This group and contact route are listed by the Neurological Foundation of New Zealand. Ask the administrators about moderation, privacy and current activities before sharing personal medical details.
Europe and other countries
FND services are unevenly distributed, and a small informal group may be more active than a national organisation.
Begin with three routes:
Check FND Hope International for an online group you can join from your time zone.
Use Neurosymptoms for reliable multilingual information and links to FND organisations.
Ask your neurologist, rehabilitation service or national neurological alliance for an FND-specific patient group in your country or region.
If no group exists locally, an international online meeting may be a better and safer starting point than a public social-media search.
How to judge whether a community is safe
Before joining, take a moment to look at how the group is run.
A supportive community should:
explain who moderates it and how to contact them;
have clear rules about respect, privacy and misinformation;
welcome different FND symptoms and different stages of recovery;
distinguish lived experience from medical advice;
allow people to step back without guilt;
avoid promises of a single cure;
never pressure members to stop treatment or medication;
be clear about fundraising, paid services and commercial interests; and
have additional safeguards when children or young people take part.
Be cautious if a group encourages fear of all clinicians, insists that one explanation fits everyone, promotes expensive treatments as guaranteed cures, or makes you feel worse every time you visit.
Your privacy matters
Private Facebook groups and messaging groups are still digital spaces. Before posting, consider whether you are comfortable sharing your full name, diagnosis, location, medication, hospital details or videos of symptoms.
You can begin quietly. Read the rules. Attend a meeting with your camera off if that is permitted. Ask a moderator how information is used. A trustworthy community will understand why you are careful.
If the first group is not right
It does not mean that community support is not for you.
One group may focus on practical rehabilitation. Another may be mainly social. Some people prefer a small local meeting; others feel safer in a structured online group. You may want support at one stage of the journey and space at another.
The aim is not to collect communities. It is to find a place where you can be understood without becoming overwhelmed.
Help us improve this directory
This is a living page. FND communities are often built by people giving their time while managing symptoms, work and family life. Their contribution deserves to be named accurately and linked properly.
Community organisers are invited to submit:
the official name of the group;
country, region and nearest city, if relevant;
whether meetings are online, in person or both;
who runs or legally operates it;
who may join;
the official website or joining link;
whether the group is moderated; and
a contact for future corrections.
Inclusion is not a clinical endorsement, and services may change.
Last reviewed: 18 September 2026
Important: Peer support can sit alongside medical care, but it does not replace assessment or treatment from an appropriately qualified professional. If you are in immediate danger or need urgent medical help, contact the emergency service or crisis service where you live.
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