EDS UK funds first EDS specialist nurse

We are proud to announce that, in partnership with the NHS, we are jointly funding the world’s first EDS specialist nurse.


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We can help

EDS UK is the only UK charity to offer support to people touched by all types of Ehlers-Danlos syndrome


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Get involved and help make our #invisiblevisible


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Nobody should be left to fight on their own. Every person with EDS should have access to the appropriate medical services and care.

That is why we are here, that is what drives us to work everyday. To offer support to anybody touched by Ehlers-Danlos syndrome.

What you can do

Featured news and stories

October 11, 2019

Ehlers-Danlos Support UK mentioned in parliamentary debate

Following Healthwatch Calderdale’s report into the experiences of adults with hypermobility syndromes published in July, the MP for Calder Valley, Craig Whittaker tabled a debate in parliament on Monday 7 October highlighting the findings of the report and calling for action.

September 28, 2019

Fundraising event for vascular EDS

Jason and Virginia Brimson are holding an evening dinner and dance 12th October Borehamwood for Annabelle’s Challenge (Vascular EDS) and need to sell more tickets! Do come forward and join them as part of the EDS family to raise much-needed funds.

September 5, 2019

EDS UK responds to BSR guidance on problem hypermobility in children

We have responded today, with the HMSA, to the guidance published recently by the British Society of Rheumatology on managing symptomatic hypermobility in children and young people. Having supported families affected by Ehlers-Danlos syndromes and the newly redefined hypermobility spectrum disorders (HSD) for over thirty years, we were disappointed not to have the opportunity to comment on the guidance before it was published. We found the guidance to be inaccurate and unhelpful in several areas. 

August 8, 2019

Healthwatch reports on experiences of people with hEDS and HSD

Healthwatch Calderdale has published a report of the experiences of people with hypermobility-related disorders across the Yorkshire and Humber region. Two hundred and fifty people took part in the survey-based study.

July 11, 2019

Wheelchairs for young people with EDS

Thanks to the generous support of The Sandhu Charitable Foundation we are pleased to announce that we will be working with Variety, the Children’s Charity , to make wheelchairs available for children with EDS and related conditions. Applications for funding can be made by a professional, parents or the young person themselves but must be supported in writing by an appropriately qualified professional.

May 31, 2019

Mast cell activation expert Dr Lawrence Afrin to talk in London in November

The Academy of Nutritional Medicine is hosting mast cell activation syndrome (MCAS) expert Dr Lawrence B. Afrin MD as part of its annual conference in London on Sunday 17th November 2019. The conference is open to anyone, with discounted tickets for patients.