Spotlight on: Sussex Ehlers-Danlos Syndromes and Hypermobility support (SEDS)

The Sussex Ehlers-Danlos Syndromes and Hypermobility Support (SEDS) voluntary
community group supports sufferers of all ages and family/carers with EDS or suspected symptoms; as it is so difficult to get a diagnosis. They provide active support, awareness in the local area to sufferers, to organisations, businesses, transportation, education and social and health departments. They can signpost people to further advice, to the national EDS UK Support Charity, other support groups and activities.

As part of a Community Fund Grant project, insight from members was collated and
anonymised and forms part of the insight and evidence that Healthwatch gather to identify common themes around what works and doesn’t work for local people.