Support Groups

Did you know...all our support groups are run by Area Coordinators who volunteer their time to organise meetings all over the country. Our Area Coordinators are from all walks of life including some who suffer with EDS, to those who care for someone with it. Without our volunteers, the support we provide to you would cease to exist, so we are incredibly grateful for the invaluable work they do.

We have over 50 groups online and face to face, with the aim to provide safe, friendly environments where members can meet others, listen to people’s stories and learn from each other. All of our support groups also have a closed regional Facebook group for members only.

We are very grateful for a Big Lottery Fund grant through the National Lottery which helps pay for the meetings, training of our volunteers and much more.

West London

Tincy, Jane and Monifah

Contact group

Your West London volunteer Area Coordinators are Tina, Jane and Monifah

Tincy: I live with Hypermobile EDS & POTS, my working life consisted of retail/office work, a few years ago I had to reduce to part time work then stop entirely as the condition began to take its toll. My focus is on doing  things unconventionally now, assuming voluntary roles, I’m passionate about projects that believe in inclusivity and are accessibility, I feel privileged to be the Area coordinator for west London, and look forward to connecting people with each other and seeing this wonderful community flourish. Tina x

Monifah: I have Hypermobile EDS & Sprengles deformity each which play hand in hand with each other which has meant I’ve spent the last ten years trying to adjust to my new normal and at 20 years old that hasn’t been easy. My goal for being area coordinator for West London is to help any young people feeling misplaced or confused with finding a way forward.   Monifah X

Jane: Although I do not had EDS myself I am the parent of a young person with HEDS and POTs.  I have spent the last 18 years educating myself to provide support to my daughter and to advocate on her behalf, dealing with schooling, health practitioners, sports and physio specialists and working to encourage her independence and self-advocacy as she became older.  I know what it feels like to have your concerns as a parent dismissed and not listened to and have found different ways to work through the minefield of diagnosis and support.  I look forward to working as one of the West London Area Coordinators and time meeting everyone.  Jane x

Members of EDS UK are welcome to join their regional closed members group on Facebook. Visit us here to join your regional group

Please note that Volunteer Area Coordinators may not get back to you immediately.

If you need to talk right now, whatever you’re going through, there are people you can talk to any time. You can:

call Samaritans on 116 123 (UK-wide)
text SHOUT to 85258 (UK-wide)
call C.A.L.L. on 0800 132 737 (Wales only)

These services are for anyone who’s struggling. They won’t judge you.

They’re free, they’re anonymous, and they’re always open.

online eds uk support group meetings

Online meeting

Date: October 26, 2021

Start: 7:00 pm

Finish: 8:30 pm

Zoom meeting link: Click here to join

Additional info: Please ensure you read our online support group meeting policy and privacy policy before attending. The online support group policy is particularly important as it sets out guidelines for how the meeting will take place and things you should consider before attending an online support group.

West London Support group meeting with Tincy All members welcome For support on how to use Zoom, please call Nikki on 07904 216063 during working hours

Further information can be downloaded here

More Support

Support groups, advice with work, help with benefits and more