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.
Brighton
Vacancy
Vacancy – contact nikki@ehlers-danlos.org
Members of EDS UK are welcome to join their regional closed members group on Facebook by clicking here
Crawley
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.
Guildford
Millie
Hi everyone, my name is Millie and I have been diagnosed with EDS, PoTS, Gastroparesis, intestinal dysfunction and the list goes on. I love dogs, dancing and discovering the world around me.
After a long gruelling battle with countless health problems, I became fixated on the idea of helping others and so in August 2022, I began my role as an Area-Coordinator. I have since held regular support groups, seasonal socials, offer 1:1 advice/support and have accumulated a wonderful group of people of which I am very proud to lead. I do all of this with the goal of creating a safe space for people to open up about the harsh realities of EDS, inspire friendships, giving hope to those along their journey and ultimately support people through the highs, lows and all the in-between. It would be an honour to meet you and introduce you to our little community which is filled with kindness, support and love.
Members of EDS UK are welcome to join their regional closed members group on Facebook. Visit us here to join your regional group.
Hastings
Lynda
I’m Lynda and excited to be your Area Coordinator for Hastings
I was diagnosed with hEDS at 49 years old, when finally I got answers to the challenges with my health and that it was real and not all in my head.
My own personal medical history has given me a good understanding and insight of NHS and it’s specialities and challenges faced by those with EDS and other related conditions.
Although my career has mostly been in the IT sector, I have been a carer for several family members for many years gaining a practical knowledge of the workings of our healthcare systems.
Being a Zebra and finding my herd has been very special to me and really looking forward to growing this herd in this position.
Members of EDS UK are welcome to join their regional closed members group on Facebook. Visit us here to join your regional group.
Woking
Joo
Hello, my name is Joo. I am excited to be the area co-ordinator for Woking.
Like many of us my road to diagnosis was long and difficult as my symptoms were varied and debilitating. After years of struggling I was finally diagnosed in 2022 by Dr Alan Hakim with Hypermobile Ehlers Danlos and Postural Orthostatic Tachycardia Syndrome.
Getting a diagnosis was so validating and cathartic, it led me down an unexpected path of leaving the corporate world behind to train as a Health Coach with the College of Naturopathic Medicine. Armed with a diagnosis and now the education, I can better control my symptoms and able to live a much fuller life.
I am incredibly passionate about helping others improve their wellbeing and hope to be of service to the EDS community long term especially as some of my children have inherited my genes.
I am looking forward to meeting you and creating a lovely community of Zebras in Woking.
Members of EDS UK are welcome to join their regional closed members group on Facebook. Visit us here to join your regional group.
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