Isla, who lives with recessive dystrophic epidermolysis bullosa (RDEB) with her dad, Andy.

What I hope for EB research is to make what was once impossible, possible. I want a brighter future for Isla; I want a cure to happen in her lifetime.

- Andy & Isla, DEBRA Members

Our research impact report

Here at DEBRA UK, Andy & Isla's goals are also our goals. By downloading your own copy of the DEBRA UK Research Impact Report 2021, you can become familiar with the impact of epidermolysis bullosa (EB) on the lives of thousands of UK children, men and women as EB researchers strive to find a cure.

Discover:

• The scope of people affected by this debilitating skin disease;
• Our positive outlook on a future free from EB;
• Specialist healthcare and services available to EB patients and families;
• Commitment to quality research on behalf of EB patients and families;
• And more. 

DOWNLOAD THE 2021 REPORT

 

How long does EB research take?

Finding out new things about how our bodies work and how we might be able to fix it when they don’t work quite so well can only happen when people already know a lot. We can fund researchers who are already experts after years of learning about how skin works and the processes of inflammation, wound healing and cancer as well as those who are experts on dressings, creams, gels and sprays, walking and joint conditions, accessibility and mobility or pain and itching. 

We fund ‘research fellowships’ to create new EB experts and EB research groups. Our Research Fellows are researchers who will use our funding to make EB their area of expertise. More experts increase the scope of EB research and drive us forward to a future where no one suffers with EB. 

Even when we begin a research project with experts, it can take years to work out all the details of a new treatment. When researchers apply for funding from DEBRA UK, we can ask them how long they think it will take for each stage of their research. Sometimes the results will be a suggestion of a new treatment rather than a new treatment itself. Sometimes the outcome will be guidelines for care that explain how to best use the treatments we currently have. Our long-term goal is to achieve a world where no one suffers with EB but this will be fought in many smaller battles.

Together we #FightEB. Together we will beat EB.

 

How will I know whether the research DEBRA UK is funding will help me and other members?

Scientists, doctors and nurses do their best to find treatments and compare them to each other to find out what works best; but some studies are better than others. We ask EB expert researchers and people living with EB to help us choose which research studies to fund. We can get an idea of how good a specific study is by asking questions like:

• How many people are in the study?
• Is the study randomised?
• Is the study double-blind?
• What will the results of the study tell us?
• How long will it take to complete the study?
• Has this been studied before?

 

How can I read the actual EB research published in scientific journals?

EB researchers are fighting EB nationally and internationally and the results of their battles are recorded as scientific publications. These are technical publications aimed at readers with a scientific background but are available to anyone who would like to search the PubMed database.

The number of research studies published that mention EB have increased massively as more time, funding and effort is put into fighting EB.

 

Diagram showing the number of EB research publications per year.

 

We'd love to hear from you!

We want to hear the voices of families living with EB to help us decide which research projects to fund.

If you would like to let us know your thoughts about our research or would be happy for us to contact you to ask for your opinion on what research we fund, please get involved.