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.

East London

Kendall

Contact group

“Hi! My name is Kendall, and I am the new volunteer area coordinator for East London. I moved to Hackney from Ohio, USA when I was 18, and I’ve been here ever since.

I was diagnosed with Hypermobile Ehlers-Danlos Syndrome at the age of 29. I was fortunate to attend the Hypermobility Clinic at UCL Hospital, where I joined a specialist pain management group therapy. Here I gained a network of others to talk to with a shared experience, and I’m so excited to join EDS UK to enable more networks for support.

Professionally I worked in the arts for 10 years, but in 2019 I resigned as my condition worsened. I have done work in disability arts, and I’m passionate about the Social Model of Disability. I am currently undertaking a degree in adult nursing at King’s College London, getting more involved in the EDS community and looking at driving change in healthcare.

I hope as the East London Support Group develops, we can make it a space where anyone can come to talk, share or just be a part of the community. Don’t hesitate to get in touch and join us.”

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.

Date: October 30, 2021

Start: 11:00 am

Finish: 1:00 pm

Venue: Classroom M3-21a, Chobham Academy, 40 Cheering Lane, London, E20 1BD

Additional info: Face to Face Support Group Meeting with Kendall

Map:

Date: November 27, 2021

Start: 11:00 am

Finish: 1:00 pm

Venue: Classroom M3-21a, Chobham Academy, 40 Cheering Lane, London, E20 1BD

Additional info: Face to Face Support Group Meeting with Kendall

Map:

More Support

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