EB Priority Setting Partnership Study
Do you still have unanswered questions about EB? Or have you ever received a response to your question about EB that wasn’t fully answered?
You’re not the only one. Over 800 hundred people, who live with EB, care for someone with EB, or who work with those affected by EB, have told us their top 10 unanswered questions about EB. The global EB community recently took part in online workshops to help us confirm and rank the final top 10 questions. These questions will become DEBRA’s research strategy for years to come and will influence EB research around the globe.
And we can now share the results with you.
Research Powered by the EB Community Wins BOBI Award
We are delighted to share that the DEBRA UK–commissioned 2025 EB Priority Setting Partnership (EB PSP) study has won a prestigious BOBI (Best of Business Intelligence) Award 2026 for Best Use of Innovation. This recognition is a huge achievement and wouldn’t have been possible without the voices of the EB community at its heart.
The EB PSP study, delivered using the James Lind Alliance (JLA) method, brought together people living with EB, family members, carers, and professionals to identify the most important research priorities for the global EB community. This approach ensures that future research focuses on what truly matters to those directly affected by EB, not just academic or commercial interests. What impressed the award judges about this study was its commitment to meaningful member involvement. By sharing experiences, insights, and priorities, members helped shape a clearer, more representative picture of what research is most urgently needed. This collective voice is what gives the study its strength and real-world impact. The real success of this study lies in what it represents, a research agenda shaped by the EB community, for the EB community. But it’s always nice to win a prize too! A huge thank you to every member who took part. The full news story is here.
About the project
DEBRA (UK) led this project with The James Lind Alliance because we believe that our research strategy should be determined by the EB community. Research strategies are often led by the interests of academics and researchers. But we want our research strategy to be led by you – the people living with EB, or caring for loved ones every day, and the professionals that support you.
We partnered with Cure EB, DEBRA Ireland, DEBRA Canada, DEBRA International, and EB Research Partnership for this project, and together have formed an EB Priority Setting Partnership which includes patients and carers affected by EB, and healthcare professionals.
