Marisa Wexler, MS,  senior science writer—

Over the coming weeks, Matter of Time — a documentary that chronicles how scientists and advocates are working to find a cure for epidermolysis bullosa (EB) — will be playing at dozens of theaters across the U.S. and France. The documentary is a concert film, but more, according to…

International Epidermolysis Bullosa Awareness Week is the last week of October — this year it’s Oct. 25-31 — and the epidermolysis bullosa (EB) community is coming together to raise awareness about the rare disorder and push towards new treatments. “Raising awareness is critical because EB is often a rare…

The U.S. Food and Drug Administration (FDA) approved an update to the prescribing information of Vyjuvek (beremagene geperpavec), a gene therapy gel for treating wounds in people with dystrophic epidermolysis bullosa (DEB), that allows its use in all patients and permits self-administration at home. The treatment was previously…

A new six-minute film called “Living Between Pain and Hope” spotlights the impact that living with epidermolysis bullosa (EB) has on two people with the fragile skin condition. The film shares the experiences of a pair of young adults living on different continents but with the same rare…

Lucile Packard Children’s Hospital Stanford, a medical facility in the San Francisco Bay Area, has completed the requirements needed to become a qualified treatment center for Zevaskyn (prademagene zamikeracel), a gene therapy approved earlier this year for recessive dystrophic epidermolysis bullosa (RDEB), according to a press release. The…

Note: This story was updated June 18, 2025, to correct the source of the analysis of Phase 3 trial data. Paradigm Therapeutics is planning to seek U.S. Food and Drug Administration (FDA) approval for the experimental cream SD-101 to treat all forms of epidermolysis bullosa (EB). Paradigm said…

The U.S. Food and Drug Administration (FDA) has approved the cell-based gene therapy prademagene zamikeracel, previously pz-cel or EB-101, for treating wounds in adults and children with recessive dystrophic epidermolysis bullosa (RDEB). The therapy’s developer Abeona Therapeutics will market it under the brand name Zevaskyn. According to Abeona,…

Note: This story was updated April 3, 2025, to correct that enrollment criteria in Europe differs from criteria at other sites. A Phase 2/3 clinical trial testing AC-203 (diacerein 1% ointment) in people with epidermolysis bullosa simplex (EBS) is recruiting participants. The trial, EBShield (NCT06073132), seeks to enroll…

Castle Creek Biosciences has secured $75 million in financing to support a Phase 3 trial testing its gene therapy to promote wound healing in people with dystrophic epidermolysis bullosa (DEB). The royalty financing agreement for Castle Creek‘s treatment, D-Fi, was led by Ligand Pharmaceuticals, which made…

France-based pharma company Theravia has obtained rights to an experimental molecule that may be used to treat epidermolysis bullosa (EB). The molecule, known as DCN-tCRK, was discovered by scientists at Tampere University, in Finland. Under the new licensing agreement, Theravia will be in charge of further drug development…

The U.S. Food and Drug Administration (FDA) is expected to decide whether or not to approve the cell therapy pz-cel (prademagene zamikeracel) for recessive dystrophic epidermolysis bullosa (RDEB) by April 29, 2025. Abeona Therapeutics, the developer of pz-cel, announced that the FDA has agreed to review a…

Pain is a frequent problem for people with recessive dystrophic epidermolysis bullosa (RDEB), and available medications are often not sufficient to control it, a study reported. “Pain is an almost universal symptom across all types of RDEB,” the researchers wrote, noting that worse pain “generally correlates with worse quality…