News

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…

The first recessive dystrophic epidermolysis bullosa (RDEB) patient will be dosed with the cell-based gene therapy Zevaskyn (prademagene zamikeracel) in the next few months, with several others lined up to follow, according to developer Abeona Therapeutics. That patient has already been selected, and their skin cells have been…

A boy with junctional epidermolysis bullosa (JEB) given combined gene and stem cell treatment in 2015 was found six years later to have a distinctive bacterial population in healthy, blistered, and transplanted portions of his skin, according to a new study from researchers in Germany. Compared with healthy controls,…

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…