SearchSupport 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.
Billericay
Vacancy
Vacancy
Burnham on Crouch
Vacancy
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Cambridge
Lyndie Zollinger
Hi everyone,
I’m Lyndie. I’m the area coordinator for Cambridge.
I finally got my EDS diagnosis in May of last year after many years of misdiagnosis.
I’m a PhD student studying the biomechanics of different joint injuries in dogs and humans.
I love dogs and live in Cambridge with my husband and my dog Elli, who is currently training to be my assistance dog.
I’ve loved the support I’ve found in online EDS communities and look forward to working more with my fellow Cambridge EDSers.
Chatteris
Vicki
I’m Vicki, it took me many years to get my diagnosis of Hypermobility Spectrum Disorder, with overlapping symptoms of hEDS. In retrospect I have been affected since birth, but only in adulthood have we been able to connect all the dots that helped everything ‘click’ into place.
I experience chronic pain and fatigue, however I still work full time as a graphic designer, and I am also a children’s book author and illustrator. I live with my husband and menagerie of pets. There’s nothing I enjoy more than being able to take my dogs out to spend quality time with them. I now need assistance with keeping them exercised, but my family are very supportive and we also have a regular dog walker, and I still get to enjoy short walks, and/or town trips with my dogs, so we can enjoy things at a slower pace together.
I have now been equipped with some walking aids, which have enabled me to regain some independence.
Chelmsford
Charlotte
I’m Charlotte, and I’m excited to be your local Area Coordinator for Chelmsford.
After a random fall and an A&E visit, I found myself on the path towards an hEDS diagnosis. After a lifetime of unexplained symptoms and searching for answers, I was finally diagnosed in September 2025 — giving me a name for what I had been experiencing for so long.
I’m a Primary School teacher, and I’m passionate about creating supportive communities where people feel understood, connected, and less alone. Having experienced the challenges of navigating diagnosis and living with hEDS, I’m looking forward to bringing people together locally, sharing experiences, and helping to build a welcoming space for the EDS and HSD community in Chelmsford.
Members of EDS UK are welcome to join their regional closed members group on Facebook. Visit us here to join your regional group. Please email nikki@ehlers-danlos.org if you are interested in volunteering.
Colchester
Hazel
I’m Hazel and I was diagnosed with EDS Hypermobile Type, along with various comorbidities, when I was 19 after multiple doctor and specialst appointments.
I live in Colchester with my husband and 2 dogs. Currently, I’m a part time psychology student and, when I have the energy for it, I enjoy reading, writing, gaming, and photography.
I’m Leah, one of your Area Coordinators for Colchester.
My diagnosis journey started in 2022 alongside becoming a wheelchair user, and I received my official diagnosis in 2024. Since then, my main mission has been to educate myself, and my loved ones about EDS/HSD and the many comorbidities that come with it.
I’m excited to expand this into a volunteer role and I hope to help as many people as I can!
Members of EDS UK are welcome to join their regional closed members group on Facebook. Visit us here to join your regional group.
Harlow
Vacancy
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You can join the East of England Facebook groups here (you need to be a member of EDS UK)
Huntingdon
Kiri
I’m Kiri and I’m really pleased to be your area co-ordinator for Huntingdon.
I was diagnosed with hypermobile Ehlers Danlos Syndrome after an 11 year journey of hip, wrist and shoulder injuries and surgeries. Later I realised other signs had been there from childhood but weren’t recognised at the time, which is what makes me very passionate about raising and spreading awareness.
I’m a dog Mum and qualified dog trainer/behaviourist, so dogs are a great love of mine, followed by books! Though I am still trying to find ways of doing things I love (something I’m sure a lot of us can relate to!) in a way that accommodates pain, injuries and flare ups.
I’m really looking forward to meeting you and hopefully creating a community in this area where we can support one another.
Ipswich
Rebecca
Hello! I’m Rebecca, Area Co-ordinator for Ipswich. I’ve lived in the area my whole life – apart from a brief university detour – so it’s truly home.
My hEDS diagnosis came relatively recently (I’ll keep my age a mystery!), spurred on by my concerns about the easy bruising of my two bendy school-aged children and the possible consequences.
Alongside my human family, I’m also pet mum to a geriatric cat – or does that make her my mum now?! – and a rescue dog who’s still learning the ropes – and we’re learning right along with her.
I currently work part-time, which gives me the flexibility to balance rest, recovery, and the lively rhythm of home life. I’m a big fan of arts and crafts and always up for trying something new.
Baking is another passion of mine, and when the occasion calls for it, I love pulling out all the stops with cake decorating.
Members of EDS UK are welcome to join their regional closed members group on Facebook. Visit us here to join your regional group
Kings Lynn
Vacancy
Vacancy
Members of EDS UK are welcome to join their regional closed members group on Facebook. Visit us here to join your regional group.
Lowestoft
Natasha
Hello my name is Natasha.
I look forward to welcoming you all in the Lowestoft community.
I have heds diagnosed 2020 at the age of 29 by rheumatology in Gorleston amongst other health conditions.
In my down time I enjoy spending time with my cat
Norwich
Meg and Charlie
Hello I’m Meg, I’m 29 years old and I’m your Area Coordinator for Norwich.
I was diagnosed with hEDS in 2015 and what a rollercoaster it has been. I am extremely passionate about raising awareness and helping others with the same condition/s to feel less alone and to help others to feel more supported in their own journey.
I live in the countryside with my little 8 month old puppy Ivy-Hope who is very cute but can be a little madam at times and likes to cause mischief which definitely keeps me on my toes!
In my spare time I like to go pottery painting, crocheting and enjoy spending time with my friends and family. I am also a huge Noah Kahan fan!
I am really excited to meet you all and hope to see you at one of the upcoming support group meetings.
Members of EDS UK are welcome to join their regional closed members group on Facebook. Visit us here to join your regional group.
Peterborough
Penny
My name is Penny, I’m a 43 year old mother of 2 teenage sons. I moved from Tunbridge Wells in Kent, to Peterborough in 2007 and have lived here since then. I was diagnosed with EDS in my 20’s but grew up with multiple health issues. I have a diagnosis of EDS hypermobile type with features of the vascular type.
I also have POTS, MCAS, chronic migraines, cerebral palsy, arthritis, bronchiectasis and GORD alongside gastroparesis. Despite all this, I enjoy shopping for gifts, arts and crafts; especially painting reborn dolls. I also enjoy social events and talking to people. I have been volunteering for various groups since I was in my 20’s
Members of EDS UK are welcome to join their regional closed members group on Facebook. Visit us here to join your regional group.
Sandy
Jessica
Hi, I’m Jess and I’m really pleased to be your Sandy Area Coordinator.
I have a diagnosis of hypermobile Ehlers-Danlos syndrome (hEDS), with further genetic assessment ongoing. My journey to diagnosis was a long one, with signs present from childhood that were not fully recognised at the time.
Like many people with EDS, I am continuing to learn how to work with my body in a way that respects pacing, limits, and long-term wellbeing.
I also live with Functional Neurological Disorder (FND) and am neurodivergent, which has shaped my understanding of how complex and individual these experiences can be, particularly within systems that don’t always offer flexibility or understanding.
I wanted to volunteer with EDS UK as a way of giving back to a community that helped me find knowledge, connection, and confidence at a time when I needed it most. Community has been vital to my own journey, and I strongly believe in the value of shared understanding and mutual support.
My hope is to help create a supportive, welcoming space where people feel heard, respected, and less alone, whatever stage they are at.
I look forward to connecting with you
Southend
Vacancy
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