DEBRA application clinics

They are informal, online meetings bringing together DEBRA members and EB researchers before they apply for funding, to discuss research proposals and shape them together.

For members, this is a chance to get closer to the EB research in the pipeline, to put your questions about the research to the researchers themselves and help to shape their projects.

For researchers, it’s a great public/patient involvement (PPI) opportunity while getting your research proposal ready for submission.  You can question those directly affected by EB about particular elements of your research design and get feedback on the readability of the ‘abstract’ and ‘value to EB’ sections of your proposal that will be reviewed by our members.

Members and researchers sign up in advance to attend the DEBRA application clinic. We will ask researchers to provide a draft version of their “abstract”, a short description of their research project written in non-scientific terms, before the clinic for members to read. We will mark them as confidential and share only with those members attending the application clinic.

During the application clinic, each researcher will have 20 minutes with the members to ask for feedback on the abstract or other elements of their research proposal. Members can quiz researchers about their proposal and share their lived experience of EB.

For more information, read our news articles about the 2025 application clinic and our first Application Clinic in 2024 including feedback from member and researcher attendees.

DEBRA will run the meeting and confirm the agenda once members and researchers sign up. We will support both researchers and members to get the most out of the session by sharing information and clarifying the aims of each researcher for the session.

Our next Application clinic will take place early 2027.

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. Our members review and score all grant proposals 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