A global resource, with a real person behind it.
Victoria is the founder and community editor. She has lived experience and works in the NHS, but this project does not present her as a doctor or as speaking on behalf of the NHS.
Why build another EDS website?
Because useful information already exists, but it is scattered across health systems, research databases, charities, support organisations, patient stories and social platforms. The aim is to make that landscape easier to navigate while always linking readers back to original sources.
What Victoria's role is
Editor, advocate and community voice. She can explain what deserves attention, commission stories, highlight research and help make complex information understandable. Medical authority stays with appropriate sources and qualified professionals.
Independence
This project is independent and is not affiliated with or endorsed by the NHS, The Ehlers-Danlos Society, Ehlers-Danlos Support UK, NCBI, Healthdirect, Orphanet or other linked organisations unless a future partnership is explicitly stated.