The Ehlers-Danlos Support UK

Who we are

EDS UK is the leading UK charity dedicated to supporting people living with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). We provide trusted information, community connection and advocacy, for better recognition, diagnosis and care. 

Our Vision: 

Across the UK, people with EDS or HSD will be connected, heard, supported and have equitable access to care.

Our Mission: 

We are the voice of the EDS and HSD community in the UK. 

We bring together people with EDS and HSD in the UK to equitably access diagnosis, treatment and care. We do this through: 

Awareness – We advocate for and empower our community to drive change. We raise their voices, and work with the NHS across the UK in pursuit of services accessible by all. 

Support – We provide a platform to support and connect our community. We deliver information and advice on living with EDS and HSD. 

Knowledge – We build knowledge through information, training and enabling research. We confront misunderstanding and challenge inequality. 

Our culture and values

We’re a small, friendly and deeply committed team, supported by an incredible network of volunteers across the UK. Together, we work collaboratively and flexibly, always grounded in empathy and a genuine understanding of the lived experiences of our community. 

We believe our people are our greatest strength. That’s why we'll invest in you - offering high quality training and development, supportive and thoughtful line management, and an environment where your contribution is truly valued.