Upcoming support group meetings

Breaking down barriers

Breaking down Barriers is a project EDS UK have been working on since January 2017. Funded by the Sylvia Adams Trust, the project aims to extend genetic services to the south Asian community, who are known to have a higher prevalence of the Ehlers-Danlos Syndromes. The first few months of the project were spent getting […]

Benefits and disabilities

Child protection and EDS

Due to the lack of awareness of the Ehlers-Danlos syndromes (EDS) and the overlap between some of their symptoms and signs seen in children who have been abused, it is not uncommon for families with EDS to be accused of fabricating or inducing illness (FII), a form of child abuse. EDS UK collaborates with other […]

Adviceline

Our free telephone and email Adviceline is available to everyone, including people with EDS or HSD, their families, friends, carers and healthcare professionals. The advice we can give is specific to EDS or HSD and we can help with questions on areas such as: Getting a diagnosis Advice on managing symptoms Understanding what EDS is Referral procedures for EDS specialists Access to ‘friendly […]

Support Groups

Did you know…all our support groups are run by Area Coordinators who volunteer their time to organise meetings all over the country. Our Area Coordinators are from all walks of life including some who suffer with EDS, to those who care for someone with it. Without our volunteers, the support we provide to you would […]