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The Ehlers-danlos Support Uk

The Ehlers-danlos Support Uk

Who we are

EDS UK was set up in 1987 to support, advise and inform those living with any of the Ehlers-Danlos syndromes (EDS). We aim to help them live a full, active and positive life.   Over 30 years later, we remain the only UK based charity that exclusively represents and supports people with any type of EDS. 

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. We have over 50 support groups around the country to provide our members with a local peer support network and we hope to expand this and create more groups in the coming months.

We run a freephone helpline which is available to everyone, including people with EDS as well as friends, families, carers, and healthcare professionals. 

EDS UK strives 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.

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

Find out more

Charity details

Registered address
Devonshire House Manor Way,

0208 736 5604

Charity number

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