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.

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.

Drayton and Market Harborough

Sarah Steele

Contact group

Please note: due to the current situation with Covid-19 we are moving all support group meetings online using the Zoom platform for the timebeing. 

Hi, I’m Sarah, having spent a lot of time knowing something wasn’t quite normal with my own body I consulted Dr Google and found EDS. I was becoming more and more sure this might be what I had so attended a support group. I was sitting together with people with similar problems and familiar stories, this was a huge relief, I wasn’t imagining it, I wasn’t being a diva, it was real. This gave me the confidence to pursue a diagnosis and aged 47 I “came out”, but the journey is not over… I know first hand the benefits of a support group so I decided to start one for the Market Harborough area as there wasn’t one. Now I don’t have to drive so far to get to a meeting and hopefully you won’t have to either! Come and meet with like bodied folk in an open and relaxed atmosphere at my local village hall, just 10-15 mins from Harborough, Corby and Uppingham. Feel free to wriggle, bring a cushion or a blanket. You are welcome to bring a carer, partner etc. too.

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



Contact group

I live on a farm in South Leicestershire and I enjoy knitting, the outdoors, sports, and picking fruit! Before joining  my husband Anthony on the farm, I was a teacher and a local radio broadcaster with the BBC.

I have 4 children, 2 of whom have EDS. Lucy and Susanna were both diagnosed at 17. It’s been hard as a parent especially in the early days when there was very little support or knowledge. I wanted to get more involved as an Area Coordinator because there is a great need for more awareness of EDS and for mutual support for both sufferers and their carers.

I have facilities on the farm to host meetings and I am really looking forward to getting started!

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



Contact group

When my hEDS left me with a damaged spine (14 years ago), I had to learn to walk and I wished then that I had people around me to share with, and who could understand the unique difficulties we faced. So when I moved to Nottingham for facilities, I was surprised that there wasn’t an EDS group locally. Knowing how alone I’d found it I never wanted anyone to go through that and immediately contracted EDS UK about being the Nottingham area coordinator

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

More Support

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