Quick answer: Start with FND Connect’s own network. Search a town or postcode on our local groups page, register in about a minute, and come if you can — there is no penalty if plans change. Groups are free and peer-led, not a clinic. If there is not one near you yet, you can start one, or join Together as One online.
A diagnosis does not automatically bring a circle of people who understand it. You may still be explaining why you cancelled plans, why you can walk one day and not the next, or why an episode can look frightening even when you have experienced it before.
That is why we built a local group network, rather than leaving people to take their chances with a Facebook search. FND Connect groups are free, peer-led rooms with the same quiet routine wherever you are: welcome, check-in, shared time, close. You register for a date. You come if you can. Plans with FND change.
FND Connect network
Find a local group
Search by town, city or postcode. The closest live groups come first. Registering takes about a minute — name, email, and who we should call if you have an episode.
Where the network is now
The directory is the live list — new groups appear there as they are approved, so use that page rather than this article as your map. At the time of writing, people can register for groups in:
- Hull — Kingswood
- Salisbury — Wiltshire
- Andover — Hampshire
- Abergavenny — Monmouthshire
- York — Fulford
- Central Aberdeenshire — Old Rayne / Insch
More groups are being set up. If your town is not on the list yet, that is not a closed door. Volunteer coordinators start new groups with materials, safeguarding guidance and Group Manager from FND CONNECT CIC.
How an FND Connect group works
Every group in the network uses the same three steps, so you are not learning a new system each time you move or visit another town.
- Find your group. Search a town or postcode on the local groups page. The closest live groups come first.
- Register to attend. Name, email, and an emergency contact. Takes about a minute. Registering helps us say hello. It is not a contract.
- Come if you can. We email the date, venue and a reminder 24 hours before. If symptoms flare, you do not owe the room an apology essay.
These meetings are not a clinic, a therapy session or an emergency service. If symptoms are new, sudden, severe or unlike your usual FND, use 999 or NHS 111. The room is for connection, not for deciding whether something is “just FND”.
What a good group can offer
Living with FND can be isolating in ways that are difficult to describe to people who have not lived it. Even supportive family, friends and colleagues may struggle with functional seizures, mobility changes, pain, fatigue, brain fog, speech changes or symptoms that vary without warning.
A well-run group offers recognition without requiring you to prove anything. Someone may understand the wait for a referral, the planning behind leaving the house, or the guilt of cancelling at short notice. Peer support can also be practical: appointment prep, energy around important events, how to talk to an employer. These are personal experiences, not instructions that will work for everyone.
Carers, partners and parents are welcome in FND Connect groups. Caring for somebody with FND can bring worry, exhaustion and a fear of saying the wrong thing. Being supported does not take attention away from the person with FND.
If there is not a group near you yet
Start with the directory anyway — a neighbouring town may be closer than it looks, and attendance can be variable by design. If the gap is real, two routes still belong to FND Connect rather than to a random online group.
Start a local group. Coordinators get a setup pack, safeguarding guidance and Group Manager so the meeting has a register, a routine and backup. You do not have to invent the model. Volunteer to start a group.
Join Together as One. Our free Discord community is for people living with FND, carers and supporters who want peer space without having to explain the diagnosis first. It is not a replacement for a local room, and it is not a crisis service. It is the online door when travel, fatigue or geography get in the way. Together as One.
Signs a group is likely to feel safe
Whether you are walking into an FND Connect meeting or trying another space, the same checks apply. Are members treated with dignity when they describe setbacks? Are there clear expectations about privacy and respectful disagreement? Does the group acknowledge that FND looks different from person to person?
Healthy groups make room for difficult days and hopeful ones. They do not demand positivity, and they do not leave people stuck in fear. You should be able to say you are struggling without being told your symptoms are your fault, that you are not trying hard enough, or that one person’s recovery plan must work for everybody.
Be cautious if a group encourages people to stop prescribed treatment, dismisses all clinicians, promises a cure, or promotes costly solutions as the answer for everyone. You decide what you share. You do not have to disclose your full name, location, medication or trauma to belong.
FND Connect groups are built around that standard: free, peer-led, same routine, no pressure to perform wellness. If a meeting does not feel right, tell us — and try another date or another group in the network rather than deciding that “support groups” are not for you.
Keeping peer support helpful, not exhausting
When symptoms are active, other people’s stories can hit hard. Taking a break is allowed. You can sit near an exit, join with a camera off if you are online, leave early, or skip a month. These are reasonable adjustments, not signs that you are being difficult.
Treat advice from peers as possibilities rather than rules. If you track episodes, a private record such as SeizeControl can help you separate your own pattern from what you read in the room or online.
When you need more than a support group
Peer support sits alongside medical care. It cannot assess new or serious symptoms. If something feels new, severe, different from your usual FND, or you are concerned for immediate safety, seek urgent medical advice. A group is also not enough if you are feeling persistently unsafe or overwhelmed by thoughts of harming yourself. Tell someone you trust and use NHS services or emergency help where needed.
Frequently asked questions
Does FND Connect run support groups?
Yes. We run a growing nationwide network of free, peer-led local groups. Search by town or postcode on the local groups page, register for a date, and come if you can.
How do I find the nearest FND Connect group?
Go to the local groups page and search a town, city or postcode. Live groups are listed by area, with the next meeting date where it is known. The directory is updated as new groups are approved.
What if there is no group near me?
You can volunteer to start one — coordinators get materials, safeguarding guidance and Group Manager. You can also join Together as One, our free online community, while a local group is being set up.
Do I have to come every time if I register?
No. Registering helps the coordinator say hello and plan the room. FND makes plans change. Come if you can.
Are carers and family welcome?
Yes. FND Connect groups are for people living with FND and the people who love them. You do not have to explain the diagnosis at the door.