Our vision and mission and theory of change

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.

The Ehlers-Danlos Support UK – Theory of Change

Across the UK, people with Ehlers-Danlos syndromes (EDS) or hypermobility spectrum disorders (HSD) will be connected, heard, supported and have equitable access to care. EDS UK’s Theory of Change explains the mission and strategies of EDS UK in supporting individuals with EDS and HSD through community support, information dissemination, and advocacy efforts.

Community and Connections

• Supporting the community through a network of support groups across the UK
• Providing support and connection through our membership programme
• Supporting the community to navigate the NHS

Information and Knowledge

• Providing advice to the EDS and HSD community
• Creating materials for people with EDS and HSD to increase their knowledge
• Educating institutions on diagnosis and care of EDS and HSD
• Supporting the research community in building the evidence base
• Increasing the number of subject matter experts

Advocacy and Access

• Amplifying the voice of the EDS UK community
• Raising awareness of EDS and HSD within primary care
• Training and empowering GPs to diagnose and refer to the multidisciplinary team
• Engaging with gatekeepers to primary care

Long Term Outcomes:

• Improved health outcomes for individuals with EDS and HSD
• EDS and HSD diagnosed and managed appropriately through primary care: A Fairer Start
• Better access to information and care for people with EDS and HSD