SearchBuilding on Nearly 40 Years of Advocacy: Delivering Systemic Change Across the UK
- 9 June, 2026
- EDS UK news
2026 has already been a landmark year for EDS UK’s public affairs and policy work.
In March, our community came together to support the Westminster Hall debate on Ehlers-Danlos syndromes (EDS) and craniocervical instability (CCI), helping to ensure that Parliament heard directly about the challenges faced by people living with these conditions. Supporters sent an extraordinary 3,606 emails to MPs, with 629 of 650 MPs (97%) contacted ahead of the debate. The campaign reached MPs from every major political party and helped secure one of the most significant parliamentary discussions on EDS and CCI to date.
Building on the momentum created by the Westminster debate, supporters across Scotland and Wales took part in our Make May Matter campaigns, ensuring that the voices of people living with EDS and HSD continued to be heard by decision-makers across the UK. In Scotland, more than 225 supporters sent 1,316 emails, ensuring that 92% of MSPs (119 of 129) heard directly from constituents about the urgent need for better diagnosis, professional education and pathways of care for people with EDS and HSD. In Wales, supporters sent 414 emails and achieved something remarkable: every single Member of the Senedd received campaign correspondence, calling for the publication of the NHS Wales primary care pathway for EDS and HSD, which EDS UK helped to develop in collaboration with NHS Wales.
Together, these campaigns generated more than 5,300 direct communications with elected representatives across Westminster, Scotland and Wales in just a few months. This level of engagement would have been unthinkable just a few years ago and reflects the growing recognition of EDS UK as a trusted voice on behalf of the EDS and HSD community. More importantly, they have helped create meaningful conversations with decision-makers and strengthened the case for systemic improvements in healthcare.
The evidence behind these campaigns remains compelling. Our 2026 members survey found that 79% of Scottish respondents and 70% of Welsh respondents waited more than five years for a diagnosis. Meanwhile, 72% of Scottish respondents and 84% of Welsh respondents reported paying privately for healthcare, treatment or symptom management related to their condition. These findings reinforce what our community has been telling us for years: too many people with EDS and HSD continue to face significant barriers to diagnosis and care.
As EDS UK approaches its 40th anniversary in 2027, these achievements build on decades of supporting and advocating for people living with EDS and HSD. The progress we are seeing today has been accelerated by the Enough is Enough campaign and the four national petitions launched in 2023. Over the past three years, we have worked with parliamentarians, healthcare leaders and people with lived experience across the UK to ensure that EDS and HSD are increasingly recognised within healthcare and public policy.
Our work is already delivering progress across all four nations. In Northern Ireland, we have secured Department of Health funding to support healthcare professional education and the development of improved pathways of care for people with EDS and HSD. In England, we continue discussions with the Department of Health and Social Care about improving recognition and support for people living with these conditions. Internationally, we recently collaborated with Medscape to produce a summary of the international diagnostic and management guidelines for EDS and HSD, helping to improve awareness among healthcare professionals worldwide. Meetings with MSPs are being arranged following the Scottish campaign, while discussions continue with Members of the Senedd to help progress the publication and implementation of the Welsh pathway.
EDS UK exists to be the voice of the EDS and HSD community in the UK and the organisation leading efforts to secure systemic change. Through research, campaigning, professional education, service development and partnership working, we are ensuring that the experiences of people living with EDS and HSD are translated into meaningful action. Every supporter who takes part in a campaign helps make that voice stronger and helps bring us closer to a future where everyone with EDS and HSD can access timely diagnosis, informed healthcare professionals and equitable care.
Thank you to everyone who has taken part and please keep an eye on our e-news for more updates as they come in.