About us

EDS UK was set up in 1987 to support, advise and inform those living with the Ehlers-Danlos syndromes. 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.

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 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.