We are all united in our vision for a world where no one suffers with EB.  To achieve this, research into EB should be aligned with the needs of the EB community by involving people with lived experience in research from the design phase onwards.

DEBRA’s grant approval process asks researchers to show how they have included PPI in their project design.  All grant proposals are reviewed and scored by our members before our Board of Trustees makes the final funding decisions.  So it can really pay to be able to explain clearly to a non-scientific audience what your project is, and how it will add value to the EB community.

EB researcher and clinician, Dr Su Lwin, worked with DEBRA for PPI input into her research design, and says:

My first experience of working with the DEBRA patient panel has been incredibly positive and helpful. I work on designing studies that sometimes involve invasive procedures for people living with EB. By discussing these aspects with people who have lived experience of EB, I was able to understand which parts of the study were relevant or not; and what types and how many procedures were acceptable to them. These details were absolutely crucial in helping shape my recent major grant application on the project - Art-EB - for the Medical Research Council Clinician Scientist Fellowship. I am very grateful to DEBRA UK for helping organise the EB patient panel meetings, and the panel for helping shape my application.

Dr Su Lwin