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

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.

June 30, 2018

Fundraiser of the month – June 2018 -Justin Searle

One of our amazing Area Coordinators Rhona’s husband, Justin Searle, took on the challenge of rowing a marathon on a Concept2 rower on 22nd June 2018, raising a fantastic £1010!

May 29, 2018

First EDS toolkit launched for GPs

The Royal College of General Practitioners (RCGP) has launched an Ehlers Danlos syndromes (EDS) toolkit for GPs and healthcare professionals. The toolkit, created in partnership with EDS UK and funded by the charity, aims to improve the recognition, response to and management of EDS in primary care.