Research

We are building research funds to support our priority research areas of pain management, EDS and the gut, autonomic dysfunction and measuring outcomes and healthcare utilisation. We also help researchers to recruit for high quality, ethically-approved studies we believe will be of interest to our community. If you would like to donate towards any of our research funds please use the form below.

Below are details on current and completed research projects we are funding or supporting. You can donate to any current research project that is being funded with EDS UK funds by clicking the donate to this project button.

RUDY Study: Rare diseases of the bone, joint and vessels study

Researcher
Dr M K Javaid & Professor R Luqmani, University of Oxford

Summary

The RUDY Study is open to those with rare disorders, as well their blood relatives. The study aims to understand more about all aspects of rare diseases of the bones, joints and/or blood vessels. These rare diseases affect less than 1 in 5000 people. Some of this new understanding will be used to develop new tests and treatments for patients with rare diseases of the bone, joints or blood vessels.

View

Diet and EDS research fund

Researcher
Professor Qasim Aziz and Lisa Jamieson at the Wingate Institute of Neurogastroenterology, Barts & The London School of Medicine & Dentistry, Queen Mary University of London.

Summary

If sufficient funds are raised, this research will trial a diet-based nutritional intervention, to determine whether symptoms can be reduced in hEDS patients.

View

Exploring the sport participation legacy of the London 2012 Paralympic Games

Researcher
Christopher Brown (PhD student), School of Sport and Exercise Sciences, University of Kent

Summary

Research suggests sport participation has not substantially increased since the London 2012 Paralympic Games. The purpose of this research is to understand why the 2012 Paralympic games has not been able to sustainably increase sport participation of disabled people. An online questionnaire is used to get the perspectives of disabled people aged 16+.

View

‘Chronic illness in young adulthood: An exploration of the experiences of young adults with Ehlers-Danlos syndrome’.

Researcher
Sophie Cresswell, Occupational Therapy student, Leeds Beckett University

Summary

The study aims to develop an understanding of the experiences of Ehlers-Danlos syndrome in young adults (between 18 and 30 years old) and explore what support and barriers impact occupational engagement. This study is a mixed methods design using online questionnaires and 1-1 interviews to explore the impact of Ehlers- Danlos syndrome on occupational engagement.

View