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.

North London

I have Hypermobile EDS. My working life has included being a journalist and a teacher, but a few years ago the condition became too disabling and I took medical retirement. Now I concentrate on voluntary projects and I’m really pleased to be the Area Coordinator for North London.

The North London area support group comprises a broad swathe of London north of the river, from Uxbridge in the West to Ilford in the East. My aim is to continue creating a wonderful active support network across the area. Meetings are friendly and relaxed, where people can get to know their peers, swap tips and experiences. In addition I hope that by working together we can raise awareness and funds to support EDS.

I am always contactable via phone, email or through our local Facebook page, please don’t get hesitate to get in touch if you’d like to discuss something or if you just need a sympathetic ear.

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.

There are currently no meetings in the diary for this support group. If you have selected to receive notifications on this support group we will notify you when one is organised. You can update what Support Groups you are notified about in your member profile.

More Support

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