Membership Shop
Search Freephone adviceline - open on Tuesdays and Fridays 9am - 3pm : 0800 907 8518

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 100 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 to all of our funders who help 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.

Boston

Hannah

Contact group

Hi, my name is Hannah, your Area Co-ordinator for Boston.

I wanted to help connect fellow zebras in the area as I have experienced firsthand how lonely it can be to not know anyone else with EDS, so would love to be able to help others no feel so alone.

In my spare time, I like to spend time with my family. But my children (one human, one canine) do take a lot of energy so my evenings are spent chilling with a Disney movie or curled up with a good book.

I look forward to meeting you all!

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

Derby

Vacancy

Contact group

Vacancy

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

Leicestershire and Rutland

Sarah Steele

Contact group

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 local 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.

Lincoln

Claire

Contact group

Hello, I’m Claire and I am honoured to be your Lincoln area co-ordinator.

Throughout my working life I have worked overseas in travel, and for the last decade, loving my jobs as a teaching assistant, before having to give up work completely 5 years ago. This devastated me as up until that point, I’d always prided myself on staying as active as possible.

I knew something had been wrong for many years as I had had many problems which hadn’t been linked to one another by the many different types of specialists I’d seen. I finally got my diagnosis of hEDS 3 years ago from 2 specialists who said they couldn’t believe it had been missed all these years.

Finally, the years of pain and fatigue, along with a shopping list of other symptoms , made sense. After years of dizziness and blood pressure issues, along with Vaso vagal syncope, and once my heart rate skyrocketed, I was diagnosed with POTS, which has really hindered the way I now live.

My positive mindset has always served me well and at times I’ve had to rely on it heavily. I have found attending the EDS group myself invaluable. The support and level of understanding from fellow zebras is so vital as a community. When we needed a new volunteer to run them, I was happy to put myself forward if I could do half as good a job as the young lady previously.

I am really looking forward to seeing you and forming a group to offer support and encourage one another in sharing your journey and experiences with this chronic illness and to help you feel visible.

I look forward to speaking and meeting up with you soon.

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

Northampton

Tracey and Nickie

Contact group

Hello and a warm welcome to you! I’m Tracey, with over 20 years of experience in home education, and more than 15 years as a Senior Nursery Officer & SENCO delivering childcare & education, I bring a deep understanding of child development, family dynamics, and inclusive care to my role as an Ehlers-Danlos Syndrome (EDS) Support Advisor and Area Coordinator for Northamptonshire.
As someone living with EDS—and a proud mum to three grown up daughters who also live with the condition—I offer not only professional insight but also personal empathy. I understand the daily challenges; the resilience it takes to build family-tested strategies for managing daily life with EDS, and the importance of being heard. I know what it’s like to advocate in medical & educational settings, building those routines that support physical and emotional well-being, to managing flares while parenting, and to celebrate the small victories that others might overlook.
“I’ve been where you are. That’s why I’m here—to walk alongside you, share what I’ve learned, and help you find your own path forward.”
In my role, I provide support and guidance, facilitate local support networks, and advocate for greater awareness and access to care. Whether I’m organizing community events or simply offering a listening ear, my goal is to create safe, empowering spaces where individuals and families affected by EDS can connect, learn, and thrive. I believe that knowledge is power, community is strength, and compassion is essential. Together, we can make a difference—one story, one family, one step at a time.

I’m Nickie, a 51 year old living with hEDS.

Living with Ehlers-Danlos Syndrome has givem me valuable firsthand insight in to the challenges of managing a long-term health condition.

Through my personal journey, I have developed resilience, empathy and a passion for supporting others who may be navigating similar experiences.

I am keen to use both my lived experience and my practical skills to contribute positively as a volunteer, helping to raise awareness, provide support and make a difference within the community.

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

Nottingham

Graham

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