Putting our hEDS together for hypermobile Ehlers-Danlos syndrome and Hypermobility Spectrum Disorders

To carry out research that is meaningful for people with hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders (plus related conditions) and healthcare professionals.

Hypermobile Ehlers-Danlos Syndrome (hEDS) is the most common type of EDS, alongside the related Hypermobility Spectrum Disorders (HSD). We know that 1 in 500 people are already diagnosed with these conditions although the true population prevalence is believed to be more like 1 in 30.

We are a multidisciplinary core team (Gemma (lead), Sally and Paul) who developed this website as part of the co-created pregnancy tools with a wider co-creation team. Gemma, Sally and Emma were the founding members of the #EDSmaternity projects. Other related projects and teams also feature on the website.