This PhD programme will aim to produce an exercise-based lifestyle intervention, helping people with vascular EDS exercise safely. This can ultimately be adopted by the NHS and healthcare systems around the world.
Are you interested in the development of an exercise-based lifestyle intervention to support people with rare disease? Individuals affected with rare diseases often feel isolated due to scarce health and wellbeing resources.
We are looking for a PhD candidate who is passionate about using exercise science to address unmet needs in the rare disease community. We have an opportunity to develop and evaluate an exercise-based lifestyle intervention for individuals affected by vascular Ehlers Danlos Syndrome (vascular EDS), a rare genetic condition affecting around 800 people in the UK.
Vascular EDS is a life-threatening condition associated with fragility of blood vessel and hollow organs. Exercise is important for health and wellbeing, however, very little is known about the safety of exercise in this patient group. By developing and evaluating an exercise-based lifestyle intervention for vascular EDS patients, the successful PhD candidate will be engaging in pioneering research to support this rare disease community. Outcomes from this study have the potential to positively impact patients locally, nationally, and internationally.
This PhD is facilitated by the Lifestyle, Exercise and Nutrition Improvement (LENI) Research Group of the Department of Nursing and Midwifery of Sheffield Hallam University. LENI Research Group is world-acclaimed research group, focusing on the development and implementation of lifestyle interventions, aiming to prevent and treat non-communicable diseases. The programme will be carried out at the Health Research Institute (HRI) of Sheffield Hallam University. The Health Research Institute acts as a nucleus for health and care research across Sheffield Hallam, providing support to research centres, groups, clusters and individuals .
This PhD programme is funded in collaboration between two charities (“Ehlers-Danlos Support UK” and “Annabelle’s Challenge”), which support people with vascular EDS. It is also actively supported by clinicians at the Highly Specialised EDS National Diagnostic Service in Sheffield. There will be opportunities to learn about the impact of vascular EDS from these specialised clinicians and patients.
Applications are now closed.
Understanding the barriers to diagnosis and care for patients with molecularly defined/rare EDS, including vEDS.
Colin Halverson, PhD, bioethicist.
Vascular EDS exercise and wellbeing research to test the effectiveness of a novel, online lifestyle intervention based on exercise for adults with vEDS.
Markos Klonizakis, Professor of Vascular and Clinical Physiology
UK adult patients genetically confirmed diagnosed vEDS.
Recruiting PhD
The resources available to UK vEDS patients are provided by Annabelle's Challenge / EDS Service / Partner Organisations.
If you are an existing vEDS member of the charity and/or patient of the EDS Service and require a replacement blue wallet card and/or additional free resources, please complete the following vEDS resource request form:
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Team AC is the backbone of Annabelle's Challenge, a team of over 40 amazing people working to support the charity and the Vascular EDS community we serve. Our team have varied roles within Annabelle's Challenge in either a volunteer and/or advisory capacity supported by the EDS Service including:
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