People with lived experience of EB are central to helping us decide what research we fund. Their involvement also strengthens the research being carried out. This could be giving feedback on research applications to help decide what projects we fund or taking part in the research itself. Click on the different projects below to see what they’re about and how you could be involved in it.
You don’t need to have a science background to take part. We want a variety of people from across the country with experiences of different types of EB to take part, so that our decisions represent as many people in the EB community as possible. Projects may also provide the opportunity to get together with other members interested in EB research.
Researchers apply for funding from DEBRA to carry out their research into EB. Help us decide which of these applications we should fund. Read more
Join our application clinics where DEBRA members and EB researchers discuss the research they’re planning. Read more
As a patient support organisation, we are often asked to give statements about what it means to live with EB. Leave your testimony to inform this work. Read more
Opportunities to take part in research and PPIE involving surveys, questionnaires and workshops are shared here. Read more
DEBRA members can get involved in clinical trials by speaking to their specialist doctor about what current trials would be appropriate. We will also share a list of opportunities here. Read more
Clinical trials may not be suitable for everyone and can only be joined through your specialist doctor. Read more
Our flagship study to understand what living with EB means to you. This study will shape everything we do at DEBRA and play a vital part in lobbying for EB support and funding. Read more
Learn more about EB research and the current projects we’re funding. Read more
Clinical trials provide evidence for the best ways to understand and treat symptoms of EB. Read more
Knowing a bit more about the science behind EB research can help to understand the research that we are funding and how it might affect DEBRA UK members. Read more