Current status: Answered by Jenni Minto on 18 September 2025
To ask the Scottish Government what support is available for the diagnosis and treatment of people with Ehlers-Danlos syndromes.
The Scottish Government recognises the challenges people with Ehlers-Danlos syndromes (EDS) face in obtaining diagnosis and care. Diagnosis usually begins with a GP referral and may involve rheumatologists, geneticists, and other specialists. Hypermobile EDS (hEDS) is diagnosed clinically, while genetic testing is available for rarer forms of EDS.
EDS can affect people in different ways. While there is no cure for EDS, treatment and support focus on helping people manage symptoms and prevent complications. NHS Scotland provides multidisciplinary care through hospitals in Edinburgh, Glasgow, and Aberdeen, and Scottish patients can access more specialist EDS services in England via cross-border referrals if clinically indicated.