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The Ehlers-Danlos Support UK Mission

Our vision

Across the UK, people with Ehlers-Danlos syndromes and hypermobility spectrum disorders (EDS and HSD) will be connected, heard, supported and have equitable access to care. 

We want a UK where people with EDS and HSD get answers sooner. A long wait for diagnosis is not “just part of it”. It must not depend on your postcode or whether your healthcare professional knows about or understands EDS and HSD. 

People should not have to explain EDS and HSD from scratch at every appointment. They need to feel believed. They need to know what will happen next and work in partnership with their healthcare professional. Support must make symptom management easier, including pain and fatigue.  

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 values

Our values reflect who we are and what to expect when reaching out to us and becoming part of our community

We act fairly and strive for equal access to care

We drive change though the voice of our community  

We listen, understand and support with compassion 

We are trusted for our knowledge and lived experience 

We are the voice of positive change in the UK  

We amplify every voice to drive change for the UK 

Theory of change

“Theory of Change” is our clear plan for creating systemic change. We want people with Ehlers-Danlos syndromes and hypermobility spectrum disorders across the UK to feel supported and able to access the care they need. We do this in three main ways. 

1. Community and Connections

2. Information and Knowledge

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

3. 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 policy makers and politicians to create systemic change

We want to see better health outcomes for people with EDS and HSD. This means earlier diagnosis, with better day-to-day management through primary care. You deserve fairer access to trusted information and the right support across the UK. 

Join us as a member 

Membership is one of the main ways The Ehlers-Danlos Support UK mission happens in real life. It keeps you connected to support and updates. It also gives you a simple way to share feedback that helps shape what we push for in the NHS and in UK parliaments. 

Become a member