Sussex Ehlers-Danlos syndromes and Hypermobility Disorders (SEDS) CIC

We actively support people of all ages with Ehlers-Danlos syndromes (EDS) and Hypermobility Spectrum Disorders (HSD) across Sussex in leading more fulfilled lives.

We offer support online and face to face providing EDS/HSD activities, accessing therapies, hobbies and events raising awareness, understanding and knowledge for people with diagnosis or symptomatic of the disorders and in the wider community.

We also support those who have symptoms but unable to get a diagnosis. As these are heritable disorders we find families members with the same presentation. So many parents/carers have caring roles plus challenging circumstances. We provide belief, support and signposting as one mission. The other is to provide specialised funding that is safe for us to undertake, or special equipment to those in Sussex. More widely we advocate in education, health, social care and transport accessibility nationally.