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The Ehlers-Danlos Support UK

Catherine Thurston
0208 736 5604
[email protected]

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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. 


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You can only apply to one Affiliate Charity at a time. For further information on how the Charity Entry process works please see our FAQs.

Please click on the event you would like to participate in:

2022 Kilomathon Scotland
   - 2022 Kilomathon Scotland 13.1k >
   - 2022 Kilomathon Scotland 6.55k >
   - 2022 Mini Kilo Scotland 2.62k >
2021 Kilomathon Virtual Challenge
   - 2021 Kilomathon 26.2K Virtual Challenge >
   - 2021 Kilomathon 13.1K Virtual Challenge >
   - 2021 Kilomathon 6.5K Virtual Challenge >
   - 2021 Mini Kilomathon 2.62K Virtual Challenge >

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Registered Charity Number in England and Wales 1157027

The Ehlers-Danlos Support UKSHOW CONTACT DETAILS