Three DEBRA funded research projects completed in 2025
DEBRA UK is pleased to report the completion of three research projects, funded by DEBRA UK and DEBRA Ireland, in 2025. These projects include translational research to turn scientific discoveries into treatments for EB symptoms, our continuing fight against recessive dystrophic epidermolysis bullosa (RDEB) skin cancer, and work on understanding the genetic causes of EB simplex (EBS). These projects all pave the way for improvements to the quality of life of people living with the painful genetic blistering condition, epidermolysis bullosa (EB).
Translational research to treat EB eye and mouth symptoms
Prof Liam Grover’s researchers at Birmingham University, UK, completed their project to develop a lubricating eye-drop based on gellan gum to help reduce eye symptoms in all types of EB. Gellan gum is a food additive (E418) made by bacteria, which is used instead of gelatine (an animal product) in vegan sweets. By dissolving different concentrations of gellan gum in water, they made a ‘fluid-gel’ eye drop. They have compared their formulation to commercially available eye drops and found that it provides better protection for the cornea. This technology is licensed to Healome therapeutics, who are currently focussing on making it available to patients.
The mouth spray previously developed by Prof Grover with funding from DEBRA UK is called Norizite and is now available to buy from Amazon. It may help to reduce EB symptoms in the mouth by:
- Sticking to the surfaces inside the mouth and providing lubrication during eating and talking. The spray can reduce friction to help prevent blisters and wounds occurring in the first place.
- Stopping mouth cells from becoming scarring cells.
- Stopping scar tissue from being rapidly produced.
Read the news article about Norizite oral spray
Read about Prof Grover’s previous project that was completed in 2022 and contributed to the development of Norizite oral spray
Dr Tom Robinson, one of Prof Grover’s researchers, spoke about the project at DEBRA Members’ Weekend in 2025 and wrote an article for our research blog. Read Dr Robinson’s blog.
Repurposing drugs to fight RDEB skin cancer
Prof Gareth Inman’s research group at the Cancer Research UK Scotland Institute screened 3,135 currently approved drugs and found that 165 of them slowed down the growth of RDEB skin cancer cells in his laboratory. The top 50 were tested more carefully at different doses. Some of these drugs could stop cancer cells from growing and some could kill cancer cells grown in the lab. The two most promising drugs will now be further investigated in pre-clinical studies as part of a DEBRA UK-funded PhD project that started in October 2025.
A genetic diagnosis for 180 people with EBS symptoms
Do you or a family member have suspected EBS that has not been confirmed by a genetic test? Dr Laura Valinotto at CEDIGEA in Argentina completed a project for DEBRA UK to sequence DNA from 180 people with symptoms of EBS in 2025. The results have been published in a peer reviewed scientific journal and give a snapshot of what genetic testing might discover in a group of people who think they have EBS. Importantly, this project also provided the majority of these people with a genetic diagnosis that is vital for them to know what treatments or clinical trials might be relevant to them.
Most of the people tested had genetic changes in keratin genes as expected. 27 different changes in the gene for keratin-5 were seen, 10 of which had never been reported before. The genetic work showed that two subtypes with different names (‘EBS with mottled pigmentation’ and ‘EBS with migratory circinate erythema’) are actually caused by the same genetic change (called ‘KRT5:c.1649del’).
17 of the 180 patients with suspected EBS were found to have dystrophic EB (DEB) instead, and a further 11 had either junctional EB (JEB), Kindler EB (KEB), or EBS caused by changes to genes less frequently responsible than those for keratin-5 and -14. This highlights the importance of getting a genetic diagnosis as early as possible as different types of EB can progress differently. No clear genetic cause was found for 19 of the 180 people with EBS-like symptoms and, while frustrating, this will end up being the case for some people with EB.
“We are deeply grateful to DEBRA UK, not only for the funding but for believing in the importance of research in underrepresented regions. Thank you for making this work possible, and for helping us give a voice—and answers—to EB families in Argentina.”
– Dr Valinotto
Our members guide our research
At DEBRA UK, we want our members to be at the centre of everything we do. In 2025 we continued to build on our success of involving people with lived experience of EB in our process of awarding grant funding and held our Application Clinic to bring researchers and people living with EB together.
Thank you to all those who have helped us decide what research to fund as experts by experience, in addition to the expert scientists and clinicians who also review applications for us.
We’d also like to thank our dedicated researchers, members of the EB community who participated and consented for their medical samples to be used for research, and our generous supporters for helping us to fund research.
You can learn more about the research projects we are currently funding, take part with our research involvement group to help us decide what research we fund in 2026, or help support our work by donating today.
Together we can BE the difference for EB.