Our Projects

Project Summary Typically, migraine prevention trials focus on reducing migraine days. This narrow focus may not capture all that is…

Project Summary We carried out two online international surveys across UK, USA, Australia, Canada, New Zealand and Ireland. The first…

Project Summary The purpose of the study is to investigate the healthcare experiences of adults in the UK that either…

Project Summary Shoulder pain is common in hEDS/HSD with the neck and shoulder being described as the main areas of…

Project Summary Postural Tachycardia Syndrome (PoTS) can seriously effect well-being and quality of life, due to its many disabling symptoms.…

Project Summary The Ehlers-Danlos syndromes (EDS) and Hypermobility Spectrum Disorders (HSD) are conditions that are not well understood. Most subtypes…

Project Summary The Beighton Score is a scoring system used to identify the presence of generalised joint hypermobility in an…

Project Summary There was an increasing recognition that the appropriate resources available for GPs and healthcare professionals to diagnose and…

Project Summary Experiences of healthcare play an important role in people’s wellbeing and how people understand, live with, and manage…

Project Summary Postural Orthostatic Tachycardia Syndrome (POTS) is a common condition, with an estimated minimum prevalence of 0.2% (n~135,000), which…

We won funding to carry out networking and awareness raising activities, building up a team of people with a range of experiences to co-create tools about childbearing and hEDS/HSD.

We carried out online and phone interviews globally to find out more about people’s experiences of pregnancy and birth with hEDS/HSD.

We carried out a review of the current literature and developed evidence-based antenatal, intrapartum and postnatal care considerations for maternity care professionals and people with hEDS/HSD.