Our research strategy
We are one of the world’s leading funders of epidermolysis bullosa (EB) research, investing an average of £500,000 every year since 1978.
That long-term commitment has helped transform global understanding of EB and laid the foundations for the treatments and cures the EB community urgently needs.
Our research strategy is laser-focused on impact: shaped by the priorities of people living with EB and powered by evidence from our trilogy of insight studies: Our insight studies | DEBRA UK.
Our ambition is bold and uncompromising: to accelerate treatments that reduce the daily impact of every form of EB — and to drive the cures that will end it.
We are backing world-class translational research with the greatest potential to change lives now, putting patient outcomes at the heart of every funding decision.
To sharpen that ambition, in March 2026 we convened and chaired the inaugural Global EB Taskforce at Hever Castle in Kent, UK. It marked a decisive step forward in the global effort to transform EB care and research, uniting leaders in science, medicine, industry, regulation and patient advocacy behind a clear roadmap for the decade ahead.
The roadmap is built on integration and urgency: connecting discovery science to faster development of new and repurposed therapies and keeping the focus firmly on what people with EB need most — less pain and itch, better function, improved quality of life and lasting disease control.
The outputs of the Global EB Taskforce will shape the next phase of our research strategy. More than a report, it is a mandate for action — calling on researchers, clinicians, industry, policymakers, funders, patient advocates and the global EB community to move faster, work together and deliver on one shared mission: to end the burden of EB and bring effective treatments — and ultimately cures — within reach for everyone affected.
Our research priorities
Our four research priorities are focused on one goal: accelerating breakthroughs that deliver real, measurable impact for people living with all forms of EB. They are:
- Scale up drug re-purposing and drug discovery programmes to fast-track effective treatments for all forms of EB.
- Expand investment in patient-centred research that tackles the symptoms and outcomes that matter most.
- Unlock deeper insight into EB pain, itch, inflammation and prevalence to open new routes to treatment.
- Build and back the next generation of EB researchers to drive the field forward.
We are calling on scientists, funders and industry partners to join us in accelerating EB research, turning innovation into treatments and changing the future for every person affected by every form of EB.
Applications are welcome from every discipline with the ambition, expertise and urgency to improve lives for people living with EB.
What types of research does DEBRA fund?
To decide which research projects should be funded by DEBRA UK, we have four areas that we think will be most likely to help families suffering with EB.
Read about the EB research projects we are currently funding.
Treatments that have already been shown to be safe and reduce symptoms of other conditions can be tested on EB symptoms.
Research on EB, eczema, psoriasis, skin cancer or other skin conditions might help to find treatments to slow, stop and/or reverse symptoms of EB.
Our bodies are made up of lots of different proteins working together. Depending on which individual protein is broken, and how broken it is, we get a different type of EB with different symptoms.
- Skin symptoms include painful blistering that can affect walking/mobility and cause infections, scarring, thickening of skin and nails, fusion of toes/fingers and hair loss.
- The chance of getting skin cancer (Squamous Cell Carcinoma, SCC) is increased for some people with Dystrophic EB.
- The surface of the eyes can be affected causing sore/dry eyes and loss of sight.
- The lining of mouth, throat and nostrils can be affected by blistering causing difficulty with chewing, swallowing and speaking that can lead to malnutrition, anaemia, delayed growth and breathing difficulties.
- Tooth enamel may not form as expected and it may be difficult to clean teeth effectively due to pain from blisters inside the mouth.
- Pain and itch are key symptoms.
Researching the causes of EB and what makes it get worse or better over time.
Understanding the causes of EB symptoms in terms of cells and proteins will help future researchers to make good choices about new medicines and treatments.
We need the best researchers to know about EB and have the opportunity to carry out research that will help us to fight EB.