EB Research News Summary: November 2025 – February 2026
In this research news summary, we’ll share updates on the projects DEBRA UK is funding and what epidermolysis bullosa (EB) research has been published over the last four months.
Researchers with DEBRA UK funding must submit regular progress reports, and a final report three months after their funding ends so that we can track how our precious funding is being used.
In this period, from November 2025 – February 2026, three of our researchers have reported on their progress:
Dr Robert Hynds works at University College London, UK, on a project to replace the broken gene in junctional EB (JEB) airway cells.
This work is bringing cell and gene therapies for EB closer by growing cells from biopsies more efficiently in the laboratory, developing new genetic approaches to prevent scarring, and by focussing on methods that could one day be used clinically.
Prof Andrew Thompson works at the School of Psychology, Cardiff University, UK, on a project to design, produce and test a self-help wellbeing toolkit for parents caring for children with EB.
The final product will be based on specific needs identified in interviews with 14 parents and seven healthcare professionals between July 2024 and March 2025. These insights are guiding the toolkit design.
Dr Ene-Choo Tan works at the largest paediatric hospital in Singapore, and the first in Southeast Asia to offer chromosomal microarray testing for children with genetic conditions.
Her researchers have successfully identified the genetic changes in two EB patients and are working on three more.
Outside DEBRA UK, researchers continue to publish their advances on EB.
Drug repurposing
Dupilumab showed long-term effectiveness and safety in real-world practice in 11 people with dystrophic EB (DEB) who received it at Henan Provincial People’s Hospital, China, between January 2021 and October 2023. Long-term Dupilumab promotes itch relief across DEB subtypes
This adds weight to our funding for a larger US clinical trial on dupilumab that Prof Amy Paller’s group is currently running.
The design of our UK clinical trial, ART-EB, to provide evidence for repurposing multiple drugs has been highlighted as a faster route to new EB treatments. Repurposing medicines may offer faster route to new EB treatment.
The study plan for our DEBRA-funded clinical trial on apremilast in France has been officially published and the trial is now well underway. Approved psoriasis drug apremilast to be tested in severe EBS.
Selumetinib, a drug taken by mouth and approved in the US and EU to treat certain types of neurological tumours, has shown promise in pre-clinical tests against RDEB cancer. Selumetinib shows promise against aggressive RDEB skin cancer.
Stem cells
Immune Bio, the company that makes CORDStrom, an experimental stem cell therapy for recessive dystrophic EB (RDEB), plans to apply for regulatory approval in the UK in 2026. Inmune Bio plans to seek approval of RDEB therapy in UK, US, EU.
Stem cells from umbilical cord blood may help prevent finger and toe deformities in mice with RDEB by reducing inflammation and supporting skin repair, according to a study from Germany and the US. Stem cell findings point to better healing in RDEB mouse model.
Gene therapy
Vyjuvek is a gene therapy gel, approved in the US, Europe and Japan, that can help treat wounds in DEB. It delivers healthy copies of the COL7A1 gene to skin cells in wounds, allowing them to produce working type VII collagen. By using an off-label, double-dose approach (3.2ml weekly instead of 1.6ml) for six months, a woman in the US was able to treat wounds covering half of her body with no reported side effects. Double Vyjuvek dose heals extensive wounds in woman with RDEB.
New treatments
Researchers in Sweden have published results of a phase 1 clinical trial on TCP-25. This is a small protein fragment (25 amino acids) of the clotting protein thrombin, formulated into a proprietary hydrogel for applying to wounds. It has been developed by Xinnate and designed to accelerate wound healing and promote tissue repair by reducing inflammation and bacterial growth. Five men with wounds due to RDEB received different doses of TCP-25 over four weeks to assess how well, and safely, it worked. The results were promising and a larger, phase 2 trial is planned in Sweden for people with DEB or JEB. TCP-25 gel may accelerate wound healing in RDEB: Phase 1 trial.
Results from the HEAL trial in France of a new mesh-free lipidocolloid technology (TLC) wound dressing were published. Healthcare professionals described the dressing as easy to apply and said it didn’t stick to their gloves, while patients reported that dressing changes were painless 95% of the time. Mesh-free TLC is a gel dressing that supports cell growth in a moist environment without sticking to the wound so dressing changes are less painful. It can be cut for customized application, and suits difficult-to-dress areas such as hands, feet, and joints. Five of 78 adults with acute or chronic skin wounds in the study had EB. New mesh-free dressing promotes skin wound healing in EB: Data.
High frequency ultrasound (HFUS) is reported to have been used in one patient to see beneath the skin surface of a 16-year-old boy with severe RDEB. The technology provided detailed, objective measurements of swelling and fluid buildup that are often invisible to the naked eye or require painful, invasive biopsies to identify. Researchers suggest that this painless imaging could change how doctors monitor the progression of EB symptoms and could be used to measure the success of new treatments. High-frequency ultrasound helps doctors see under EB skin surface.
New information about EB
Researchers in Spain have published their work showing that low zinc levels are found alongside more severe EB symptoms. Zinc deficiency was found in a third of the 84 people living with RDEB that they tested, with adults more affected than children. Their results showed that zinc deficiency was associated with anaemia and more chronic wounds. Zinc deficiency in RDEB tied to worse skin damage, greater anemia.
Seeking to learn more about pregnancy outcomes in EB, scientists in Austria conducted a survey of 19 women with EB who had given birth to a total of 33 babies. Most were born vaginally and half of the mums breastfed. The findings emphasize a need for individually tailored care to support people with EB during and after pregnancy with extra focus on common issues like anaemia and breastfeeding support. EB symptoms generally stay stable, even ease in pregnancy: Study.
Scientists examined the DNA of 126 unrelated people living with RDEB in Spain, France, Argentina, Chile, Colombia, and the US with a specific genetic change in the COL7A1 gene (c.6527insC). They concluded that people with this genetic change share common ancestry linked to the 10th century migration of people from the Middle East into the Iberian Peninsula (known as Sephardic Jews) then their emigration from Spain to other European countries, the Middle East, North Africa, and the Americas in the 15th century as a result of the Spanish Inquisition. Scientists track RDEB’s genetic cause back to Sephardic ancestors.
Check back for the next update in July 2026.