EDS UK

EDS UK

EDS UK was set up in 1987 to support, advise and inform those living with Ehlers-Danlos Syndrome and help them live a full, active and positive life.


We are the only UK based charity that exclusively represents and supports people with any of the types of EDS. This is regardless of their position on the EDS spectrum.We run regular events and conferences to bring our community together and produce literature and merchandise to increase understanding in managing the condition.


EDS UK strive to educate the medical community promoting joined up medical care, treatment, management and improve accurate diagnosis. We fund vital research to further understand EDS, finding the gene responsible and working towards a cure.

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


Email: info@ehlers-danlos.org
Phone: 0208 736 5604
Freephone Helpline – 0800 907 8518
Website: www.ehlers-danlos.org