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.


Sarah Steele

Contact group

Sarah is our Area Coordinator for Drayton

Date: January 12, 2020

Start: 12:00 pm

Finish: 2:30 pm

Venue: Drayton Village Hall, Hall Lane, Drayton, Leics. LE16 8SA

Additional info: Support group meeting in the village hall - refreshments provided.




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!

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.



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

Date: December 2, 2019

Start: 11:00 am

Finish: 1:00 pm

Venue: Nottingham Community and Voluntary Service, 7 Mansfield Road, Nottingham, NG1 3FB


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