The Impact Our Members Make on EB Research

Every year, EB researchers from across the globe apply to DEBRA for funding to help turn new ideas into real progress for the EB community. These applications are reviewed by clinical and scientific experts who assess the quality of the research and advise our Board of Trustees on which projects best align with our research goals.

But expertise doesn’t stop at the laboratory.

We invite our members—people with lived experience of EB—to review these research proposals too. As experts‑by‑experience, your insights help us understand what truly matters to the EB community. You tell us which projects feel relevant, meaningful, and worth pursuing. Your comments (but not your scores) are shared directly with the researchers so they can strengthen their proposals and address any concerns you raise. Positive feedback is just as valuable as pointing out areas that need more clarity—both help shape better research.

Your scores and comments, along with researcher responses, are then considered by our Scientific Grants Advisory Panel alongside the reviews from scientific and clinical experts. Our Charitable Purposes Committee uses all of this information to recommend which projects should receive funding, before the final decision is made by DEBRA UK’s Board of Trustees.

What this means is simple but powerful: your voice directly shapes the future of EB research.

It ensures that what we fund isn’t just driven by researchers’ interests or professional assumptions—it’s grounded in what you think is important.

Key successes of this involvement programme

• Accessible and flexible: We’ve designed the process to be bite‑sized and manageable, so more members can take part without needing to commit days of reading or attend long workshops.
• Strong involvement: Each year, around 12 or more members review research proposals—far more than the 2–3 reviewers usually involved in other organisations.
• Your choice, your pace: You can review as much or as little as you like.
• Transparency and trust: You get to see what research is in the pipeline and how decisions are made, helping hold us to account.
• Growing engagement: Since launching in 2022, around 35 members have taken part in reviewing EB research—and the number continues to grow.