The Ehlers-Danlos Support UK was founded in 1987. We are the largest UK charity that exclusively represents and supports people with all types of EDS and HSD. We also run the only UK Adviceline for anyone affected.
- UK-wide EDS and hypermobility support, whatever your postcode
- Volunteer-powered, with local connection and lived experience
- Clear, trusted information, written to be easier to use on hard days
- A stronger voice, so more people are heard sooner
What you tell us leads to real impact. We use your feedback to push for better care in the NHS. For example, we helped bring EDS knowledge into GP care through our toolkit with the Royal College of General Practitioners. We have also taken our research into the House of Commons. It’s part of a bigger plan at EDS UK, and it starts with listening to you.
Why the zebra?
“When you hear the sound of hooves, think horses, not zebras.”
This phrase is taught to medical students throughout their training.
In medicine, the term “zebra” is used in reference to a rare disease or condition. Doctors are taught to assume that the simplest explanation is usually correct to avoid patients being misdiagnosed with rare illnesses. Doctors learn to expect common conditions.
But many medical professionals seem to forget that “zebras” DO exist and so getting a diagnosis and treatment can be more difficult for sufferers of rare conditions. Ehlers-Danlos syndromes and hypermobility spectrum disorders (EDS and HSD) are considered a rare condition and so sufferers are known as medical zebras. This identity has now been adopted across the world through social media to help bring our community together. Many people in our community really connect with the zebra, and you will often see zebra prints, badges and other zebra-themed items worn as a sign of recognition and solidarity.
