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September 17, 2026
Our voices matter
Our voices matter
June 15, 2026
Government responses show why EDS and HSD pathways are urgently needed
The media coverage of the hEDS-START research included responses from government spokespersons across the UK. These responses show that the problem is being recognised, but they also show why campaigning must continue.
June 9, 2026
Building on Nearly 40 Years of Advocacy: Delivering Systemic Change Across the UK
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.
June 5, 2026
Help Us Double Our Impact This June
From 22nd - 29th June 2026, EDS UK will be taking part in the Small Charity Week campaign – and we need your help to reach our £20,000 fundraising target.