To carry out research that is meaningful for people with hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders (plus related conditions such as PoTS) 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. People with hEDS/HSD might also have Postural Tachycardia Syndrome (PoTS) or related orthostatic intolerance.
We are a multidisciplinary team led by Dr Gemma Pearce. Gemma, Sally and Paul were the core team 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. Ben designed the website and helps keep it going. Sabs helps to maintain the website with Gemma.
Follow us for the latest on hypermobile Ehlers Danlos Syndrome and Hypermobility Spectrum Disorders.