Research into treating EB symptoms will improve lives, but how do researchers decide what symptoms or medications to study? How do we 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 and agree that it “… is very important for patients, to have meetings with researchers,” as one of our Application Clinic attendees said.

Over a dozen DEBRA UK members joined four researchers in our online event that was a “great initiative” and a “…good opportunity to get out of my lab bubble and communicate with real people.” 

One attendee described it as...

An innovative experience that allowed lay people to question, offer comment and better understand and appreciate the researchers.

Members were able to ask researchers about their work and find out more details about what’s in the pipeline for EB research. 

I found it a really good way to both understand the projects and give the researcher valuable feedback that would help when they came to submit their project for funding. I also think it was a great way to see if the projects would really help the people who live with EB every day.

Researchers received feedback from members on their proposals and let us know that there will be improvements to the design of their projects, as well as how they explain their work because of this. 

I obtained valuable feedback on many key aspects of my project. For example, I identified the most convenient way to deliver my drug to patients.

The Application Clinic was an...

Excellent way to engage and get feedback, I value it immensely and I believe it helps us improve our projects.

The deadline to apply for our 2024 research funding at the end of March meant researchers had time to take on board comments from our members at the Application Clinic before submitting their proposals.  Our hope is that by involving members at the design stage, the research we fund will be easier for our members to understand and review; it will be designed with the EB community at the heart, and ultimately produce results that are more relevant to our members. 

One researcher said...

 I received feedback from DEBRA UK at the most valuable time in the grant writing process.

In April, our members have the opportunity to help us decide what research we fund by reviewing any or all of the applications submitted for our research funding. This takes around 15 minutes per application, and last year, these scores and comments greatly enhanced our awards process. You do not need to have any scientific knowledge to take part in reviewing applications as a DEBRA member. Being directly affected by EB creates the expertise by experience that makes your insights and opinions valuable to our research grants award process and at the Application Clinic.

Why not take part this year in helping us decide what EB research to fund?


Help us decide what research we fund


The Application Clinic was moderated by members of the DEBRA UK Research Team who kept the event running to time, but the discussions went right up to the final minute and left many attendees wanting more. Thank you to all the researchers and DEBRA members who attended for making it a “…very rewarding experience” and “motivational for all future scientific research”. 

Please come again next year!