Our 2026 Application Clinic
Improving research by bringing researchers and people living with EB together
Research into treating the causes and symptoms of epidermolysis bullosa (EB) aims to improve the lives of people affected by EB. But how do researchers decide what symptoms or treatments to study and what approaches would be acceptable to people taking part in studies and trials? How do we, at DEBRA, know what people living with EB want us to spend our precious funds researching?
More and more, we are trying to involve our members in guiding the direction of EB research.
On 12 February 2026, we brought EB researchers together online with ten DEBRA members for our annual Application Clinic as part of our research grant award process.
The online meeting (held via Zoom) lasted an hour, and attendees were split into two groups, with DEBRA staff members facilitating each session. We were pleased to hear from an attendee that “The meeting felt truly valuable and thoughtfully facilitated. I would like to sincerely thank the DEBRA UK team for creating such a respectful and open space for dialogue.”
The plain language summaries of the proposed research were scrutinised in advance by members who had lots of questions and comments, with researchers also asking questions of the members to get some fine tuning for their plans. Members highlighted any jargon in the plain language summaries that made the proposals harder to understand. These “Abstract” and “Value to EB” sections of the application form are where researchers explain what they are planning to do and why they are planning to do it.
After our 2026 grant call closes at the end of March, it is these sections that are reviewed by members to help us decide what research we fund as part of our research grants award process. We encourage members at the Application Clinic to question the language used in these proposals to help avoid jargon and make it as clear as possible for people without a scientific background to review once the proposals are submitted. We hope that this will improve the research proposals we receive during our grant calls and are encouraged by feedback from a member asking us to: “Try to get more researchers to put their applications in front of a clinic… This could help shape/focus research in the very initial stages.”
Our members attending the Application Clinic get the opportunity to meet researchers, influence the direction of their work on EB, and ask questions about what might be possible now and in the future. One member highlighted that “Even though researchers are obviously dedicated to helping EB it is still very difficult for them to understand what the actual impact of EB is and therefore how their research can be focused constructively. The applications I heard both sounded like very valuable research that I hope will be funded and furthered.”
Another was simply “pleased to see some more good research proposals coming through again this year.”
We hope we make the sessions enjoyable as well as useful. We had feedback from one member that “Overall, it was a really good use of time… and it was great to see both sides asking and answering questions about their potential research.”
We were pleased to hear that “it was a relaxed enough session that each side could ask questions without it feeling like someone was being put on the spot, everyone was there to help.”
The main suggestion we had from attendees to improve the session was to have more time, so they can feel even more informed about the research discussed. We plan to take this on board and allow a little more time next year.
The discussions at the Application Clinic were wide ranging including the practicalities of new and cutting-edge technologies for introducing genetic treatments into skin.
“Conversations like this are essential, as they bring researchers together with people living with epidermolysis bullosa and allow us to listen more deeply. As scientists, we often focus on molecular pathways and treatment strategies, but this session helped us better understand what truly matters most to those living with EB.”
We hope that, in response to member comments, researchers will be able to adapt their plans and submit clearer and more relevant applications for our research funding. Based on some of their feedback, it’s working!
“The session… provided valuable insights into lived experience, which will meaningfully inform my future clinical and research work with people affected by epidermolysis bullosa.”
“I understand how the disorder manifests on a daily basis now, my weighting to the patient issues has changed from this.”
The 2026 deadline to apply for research funding
The deadline to apply for our 2026 research funding is at the end of March, so there is time for researchers to take on board comments from our members at the Application Clinic before submitting their proposals. By involving members at this stage, we hope that the applications we receive will be easier for our members to understand and review, and that the research we fund will be as relevant to them as possible.
How members can get involved next
In April, all our members have the opportunity to help us decide what research we fund by reviewing applications submitted for our research funding online from their own homes. It takes around 15 minutes per application, and we are grateful for reviews of as many or as few as you like.
Sign up for a one-hour Zoom meeting on 16 or 17 April 2026 to get an explanation of the process and ask any questions you have without any commitment to take part. The scores and comments we receive from our members greatly enhance our awards process. You do not need to have any scientific knowledge to take part in reviewing applications as a DEBRA UK member, but you will be asked to declare your EB type and any conflicts of interest that might influence your opinion.
Being in a family living with EB gives you the expertise by experience that makes your insights and opinions invaluable to our research. Please consider taking part this year and help us decide what EB research to fund.
We kept the Application Clinic to time, but the discussions went right up to the final minute. To hear more from EB researchers about the work they are doing, please come along to one of our monthly Research and Health webinars or listen to the recordings on our website.
Thank you to everyone who attended the 2026 Application Clinic. Good luck to all the researchers with your applications – and, to all our members, please come again next year!
“I’m looking forward to next year’s clinic already!” – 2026 Application Clinic attendee