#timetodiagnosis

Join our May Awareness social media campaign and share your #timetodiagnosis.


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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

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!

April 26, 2019

Dr Alan Hakim sabbatical

Consultant rheumatologist Dr Alan Hakim announced yesterday that he will be taking a 12 month sabbatical from clinical work to focus on education, training new colleagues and research. 

March 19, 2019

Webinar recording available – get the most for your child from schools and professionals

On Tuesday, March 19th at 11am, the author of Ezra’s Extraordinary Stripes, educational and child psychologist Dr. Louise Lightfoot, came to our office to broadcast a free webinar for EDS UK members on how to get the most for your child from schools and professionals.