News

Airway involvement is a rare but burdensome and life-threatening manifestation of epidermolysis bullosa (EB) that requires prompt and proper management, according to a recent case report. Researchers in Saudi Arabia described four children with EB who were brought to their clinic showing involvement of their larynx, or voice box,…

New study findings point to neutrophils, a type of immune cells, as possible players in epidermolysis bullosa acquisita (EBA) — and to an enzyme in them as a potential therapeutic target for the autoimmune disease. Taking away that enzyme, called spleen tyrosine kinase or SYK, from neutrophils stopped EBA…

Topical morphine gel can help to ease pain related to wounds in people with epidermolysis bullosa (EB), a new report suggests. The treatment was used with good results in three EB patients in the U.K. “The case studies suggest a positive effect of topical morphine gel on painful wounds…

The level of soluble transferrin receptor (sTfR) in blood may help diagnose more children with anemia, a condition caused by having too few red blood cells that’s common in recessive dystrophic epidermolysis bullosa (RDEB), a study suggests. The study, “Iron status and burden of anemia in children with…

The U.S. Food and Drug Administration (FDA) has delayed by three months its review deadline for Krystal Biotech’s gene therapy gel Vyjuvek (beremagene geperpavec) for dystrophic epidermolysis bullosa (DEB). The decision on Krystal’s application for approval of Vyjuvek, previously expected by mid-February this year, has been…

Blocking the activity of an immune cell receptor protein called FcyRIV prevented the development of epidermolysis bullosa acquisita in mice, a new study reports. The findings suggest this protein as a potential therapeutic target for this form of epidermolysis bullosa. The study, “Therapeutic effects of…

Disease activity may remain stable over years in people with epidermolysis bullosa, but will increase in the absence of treatment, according to a new report from a team of researchers in Australia. The team used the Epidermolysis Bullosa Disease Activity and Scarring Index, known as EBDASI — a…

An adenine base editor (ABE), a kind of molecular tool, was used to fix a disease-causing mutation in lab-grown fibroblasts from a person with dystrophic epidermolysis bullosa (DEB). The fix restored production of type VII collagen (C7), the protein missing in the disease, a study found. If the findings…

People with epidermolysis bullosa (EB) have an increased risk of delayed puberty and low bone mineral density (BMD), according to a medical records analysis. Increased incidence of delayed puberty with associated low BMD was notably seen in those with the recessive dystrophic epidermolysis bullosa (DEB) subtype. Predictors of…

The Venture into Cures virtual event raised more than $1.3 million for EB Research Partnership (EBRP), which seeks to advance research to cure epidermolysis bullosa (EB) and other rare diseases. In total, the three editions of the event, hosted by EBRP co-founders Jill and Eddie Vedder, have raised more…

Getting gene editing based on CRISPR, a kind of molecular scissors, delivered directly into cells may help restore the production of type VII collagen, the protein that’s missing in patients with dystrophic epidermolysis bullosa (DEB), a mouse study found. If the findings hold in humans, they “would allow the…

On Nov. 20, Jill and Eddie Vedder will host the third annual Venture Into Cures, a virtual show aimed at raising awareness for epidermolysis bullosa (EB) and funds for EB Research Partnership (EBRP). The event will feature stories about people with EB and their families, musical performances, and several…