New children's book

Our beautiful new book to help young children live with The Ehlers-Danlos syndromes is now available


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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

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.

March 1, 2019

EDS UK sign the Rare Disease UK’s open letter to the Government

The Ehlers-Danlos Support UK signed the Rare Disease UK's open letter calling on the Government to review and refresh the UK Strategy for Rare Diseases. 

January 18, 2019

Ambassador Anoushé Husain climbs with EDS in new short film

Ehlers-Danlos Support UK ambassador paraclimber Anoushé Husain talks about climbing being her physiotherapy for her EDS in a new short film released this week. The film, called If I Can, shows Anoushé as she ventures away from the indoor climbing wall and into outdoor climbing.

November 20, 2018

Statement on the law regarding cannabis-based products for chronic pain

The following joint statement is from the HMSA, the Ehlers-Danlos Support UK and The Ehlers-Danlos Society on cannabis-based products, chronic pain, and hypermobility-related disorders and is regarding changes in the law in the United Kingdom. As of the 1st November 2018 the UK Government has changed the law such that doctors can prescribe cannabis-based medicines.

August 31, 2018

Fundraiser of the month – August – Stephen Lister & Josh Waddell

Stephen Lister and close friend Josh Waddell took on the incredible challenge of the Edinburgh Marathon in May as Stephen's sister Abigail has EDS. Together they raised an incredible £10,484.53, including matched giving from Stephen's employer Apple Inc!

August 22, 2018

Meet our new Medical Advisory Panel members

EDS UK welcomes two new members to its Medical Advisory Panel. Lisa Jamieson, pharmacist and nutritionist and Dr Kate Barnes, GP, bring welcome additional knowledge, skills and experience to the panel.