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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.

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.

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.

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