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Application clinics
Each year, EB researchers from around the world apply to DEBRA for funding for their research projects. Different types of experts work with us to make sure we fund research of most benefit to the EB community. These experts include our DEBRA members as experts by experience.
Research is better when projects have been designed in collaboration with the people who will directly benefit from the outcomes. This is where our application clinics come in.
Our first application clinic, bringing researchers and members together, was held in February 2024 and we hope you will join us for the next one at 6:30pm on Thursday 13 February 2025. You can register to attend the meeting below.
All members can sign up to be a part of DEBRA’s Involvement Network to hear about these opportunities first.
To see what research we are currently funding, visit our research pages.
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, and to put your questions about the research to the researchers themselves.
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, or you can get feedback on the ‘abstract’ and ‘value to EB’ sections of your proposal.
Members and researchers sign up in advance to attend the DEBRA application clinic. The researchers will send a draft version of an “abstract”, a short description of their research project written in non-scientific terms, before the meeting for the members to read. These will be marked as confidential and shared 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.
Read our news article about the first Application Clinic in 2024 including feedback from member and researcher attendees.
Our next application clinic will be held online at 6:30pm on 13 February 2025. The deadline to register your interest is 6 February 2025. DEBRA will run the meeting and confirm the agenda once members and researchers are signed 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.
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. All grant proposals are reviewed and scored by our members 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