DEBRA UK is leading a project with The James Lind Alliance to identify the most important unanswered research questions about all types of EB.
We have formed an EB Priority Setting Partnership which includes patients and carers affected by EB, as well as healthcare professionals who work with those affected by EB, and representatives from DEBRA Canada and DEBRA Ireland. Together we’ll be engaging the EB community to help us understand what EB research should be focused on finding out and creating links with research partners to make it happen.
We will be launching a global survey at the end of May 2024. And we’ll need as many members of the EB community to take part as possible, to sure make our findings are relevant to you and your family. Don’t miss your chance to have your say – sign up to be the first to hear.
Tell us you’re interested
The project is led by patients, carers and healthcare professionals – meet them here. Read more
Find out what stage the project is at, and how to get involved. Read more