The Ehlers-Danlos Support UK

Who we are

Ehlers-Danlos Support UK (EDS UK) has ambitious plans for growth to improve lives for people in the UK living with the Ehlers-Danlos syndromes (EDS). These are a group of connective tissue disorders which can be extremely challenging to live with, affecting most of the body. One type is life-threatening. The route to diagnosis is often long and complicated and people affected have to fight to get the treatment and support they need.

We provide support and information to those affected by EDS. We also work closely with medical and healthcare professionals and other organisations to increase the understanding of EDS in medical practice across the UK, reduce the time to diagnosis and improve knowledge of EDS through research.

We pride ourselves on being bold, well-informed and focused and we use our personality to inspire change and benefit all those touched by EDS. We believe that nobody should be left to fight on their own. Every person with EDS should have access to the appropriate medical services and care.

We have been successful in raising our profile in recent years and we have a track record of collaboration. We now want to build on our reputation and form strong relationships to develop a new network of supporters, while also taking good care of the community which has brought us to where we are.

We are a small, friendly team with staff working in our office and remotely and a large network of volunteers throughout the UK. Our office is in Borehamwood, Hertfordshire. We recognise that people are our greatest asset and we support paid staff and volunteers with high quality training and development and thoughtful line management.