News

Scientists traced a common genetic mutation that causes recessive dystrophic epidermolysis bullosa (RDEB) to the Sephardic Jewish population, a group that has roots in Spain and Portugal. Even so, analysis showed that the RDEB patients who carry the mutation assessed in the study, both in Europe and the Americas, did…

Stem cells from umbilical cord blood may help prevent finger and toe deformities caused by recessive dystrophic epidermolysis bullosa (RDEB) by reducing inflammation and supporting skin repair, according to a study in a mouse model of the disease. To explore a way to better protect the skin’s barrier, the…

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…

Vyjuvek (beremagene geperpavec) successfully healed widespread skin wounds on an infant boy with severe dystrophic epidermolysis bullosa (DEB), according to a case study. Before treatment with gene therapy, the boy failed to thrive and achieve major motor milestones. After four months of weekly Vyjuvek, however, he developed motor…

Children’s Hospital Colorado has become a qualified treatment center for Zevaskyn (prademagene zamikeracel), a cell-based gene therapy for recessive dystrophic epidermolysis bullosa (RDEB). The center announced that it is now ready to start identifying patients for treatment. The Colorado center follows the Ann & Robert H. Lurie…

People living with epidermolysis bullosa (EB) generally reported that Filsuvez (birch triterpenes) had a beneficial effect on wound healing, according to a real-world study in Germany. The treatment helped with faster wound healing and closure, with less bleeding and inflammation. Some patients also reported a reduction in pain…

Filsuvez (birch triterpenes) reduced the burden of wound dressing changes for people with dystrophic epidermolysis bullosa (DEB) and junctional epidermolysis bullosa (JEB). The frequency of changes — along with the time and estimated money spent on them — went down with the topical therapy. That’s according to new…

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…

People with recessive dystrophic epidermolysis bullosa (RDEB) have two different kinds of wounds — chronic open wounds that are larger, more painful, and slow to heal, and recurrent wounds that repeatedly close and reopen, but almost always heal on their own. These findings from a new study suggest that…

In a small study in Japan, the topical gene therapy Vyjuvek (beremagene geperpavec) was shown to work similarly to what was seen in an earlier U.S.-based trial, now safely and durably closing wounds for four Japanese people with dystrophic epidermolysis bullosa (DEB). The new data comes from an…

A laser-based dental therapy called photobiomodulation helps ease pain related to oral damage in people with epidermolysis bullosa (EB), a study reports. Most study participants had mucosal lesions in the tissues lining the mouth, and nearly half had caries, or cavities, among other oral health issues. Mucosal lesions had…