The Ehlers-Danlos Support UK

Run For The Ehlers-Danlos Support UK

Catherine Thurston

0208 736 5604

[email protected]

EDS UK was set up in 1987 to support, advise and inform those living with Ehlers-Danlos Syndrome. We aim to help them live a full, active and positive life.   Over 25 years later, we remain the only UK based charity that exclusively represents and supports people with all types of EDS. EDS is a genetic connective tissue condition that is a multi-systemic syndromeEDS is a genetic connective tissue condition that is a multi-systemic syndrome.  Connective tissue covers over 95% of your body so there is little that escapes the symptoms. 

We run regular events and conferences to bring our community together, and produce literature and merchandise to increase understanding and improve management of the condition. 

EDS UK strive to educate the medical community, promote continuity of care, improve accurate diagnosis and provide information on specialist treatment and management of the condition.. We also fund vital research to further understand EDS, including searching for the gene responsible for the hypermobility type and working towards a cure.

We are a charity and rely on fundraising and donations to continue our work. Your support is greatly appreciated and is essential to ensure we can continue to make our invisible, visible.