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

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.

April 3, 2018

Listen to our BBC Radio 4 appeal

The charity appeal on BBC Radio 4 this Sunday will be for EDS UK.  We are so pleased that the Ehlers-Danlos syndromes and the challenges of being diagnosed will get such great exposure. The appeal will be broadcast on Sunday 22nd April at 7.55am then again at 9.25pm the same day and at 3.25pm on Thursday 26th April. 

February 14, 2018

Fundraiser of the Month – January 2018

Victoria Raised an incredible £525 taking part in her walking event