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.


Kate, Ali and Ellie

Contact group

Hi.  We are Ali, Ellie and Kate, the Sevenoaks EDS Support Group Coordinators.

Ali:         I am one of those people who have spent years wondering how so many things could be a problem for one person! I used to tell people I must have been made on a Friday afternoon while God was napping! Finally I have a diagnosis of hEDS and had the surreal experience of sitting in a room with a load of other zebras just like me – it felt like coming home. I hope that this group will do the same for a few more people. Ali

Ellie:      Hi, I’m a 20 something nanny, but currently I can’t work due to my health. I live with my parents and love any form of craft and art whenever my health allows. I love chatting anything childcare, craft or rabbits! I am really excited to connect with other people who have EDS (or suspect they do) and share both the good times and the hard ones together.  Ellie

Kate:     Just over a year ago I finally met a doctor who knew what was wrong with me.  I lose a day each week to sleep, have to work at managing pain, but outside of that I’m learning to dance with my husband, I love being a busy Mum, catching up with family & friends, going on holiday and hiking.  I’m looking forward to meeting fellow zebras and hope this group provides support for for all of us. Kate

Perhaps unsurprisingly, the three of us (& Kate’s younger daughter) met at the physio’s gym in Sevenoaks, and since then we have become good friends.  We enjoy chatting without having to explain, whether comparing experience with doctors, favourite salty snacks, or not looking sick.

With help from the lovely team at EDS UK we decided to set up a local support group, and we look forward to welcoming you!

Best wishes

Ali, Ellie and Kate

Facebook: Ali Ellie Kate

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