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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Are you up for a challenge?

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

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.

May 17, 2019

New London-based rheumatology and hypermobility clinic for adults and children

Professors Rodney Grahame and Ian Chikanza announce the inauguration of a new clinic to be established within the Harley Street Clinic (HCA Healthcare) at 16 Devonshire Street, London, W1G 7AF. The clinic is a new concept of care offering world-class rheumatology care for adults, children and adolescents together with the full panoply of diagnosis and management of hypermobility-associated disorders including the Ehlers-Danlos syndromes and the hypermobility spectrum disorders.

May 7, 2019

EDS UK and Annabelle’s Challenge fund largest vascular EDS research database

The Ehlers-Danlos Support UK is delighted to announce that we and Annabelle's Challenge are jointly funding the creation of one of the largest vascular Ehlers-Danlos syndrome (vEDS) research databases in the world.

May 1, 2019

MAY AWARENESS CAMPAIGN 2019

TIME TO DIAGNOSIS

To help raise awareness of the Ehlers-Danlos syndromes and hypermobility spectrum disorders this May, help us to highlight how long it takes to get a diagnosis. Share your #timetodiagnosis image!