News

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…

EB-101, an investigational gene-corrected cell therapy, safely and effectively heals large, chronic wounds and eases pain in people with recessive dystrophic epidermolysis bullosa (RDEB), according to top-line data from the Phase 3 VIITAL trial. “We are very pleased with the topline results from our pivotal VIITAL study, which…

Pulsed dye laser therapy — a treatment commonly used for skin conditions such as certain types of birthmarks and scars — resulted in fewer blisters and eased erythema (reddening of the skin) in a 19-year-old girl with dominant dystrophic epidermolysis bullosa (DEB), according to a recent case report. The…

From sharing images and information on social media, to holding fundraisers to spread the word about epidermolysis bullosa (EB), supporters are set to mark National Epidermolysis Bullosa Awareness Week Oct. 25–31. “National Epidermolysis Bullosa Awareness Week … is a time to increase awareness of EB, to promote the need for a…

Many patients with dystrophic epidermolysis bullosa (DEB) need the help of a caregiver at home, and this adds up to their direct costs, which are higher than the mean costs of all patients with epidermolysis bullosa, according to a study covering five countries in Europe.  On average,…

Patient follow-up has now been completed in VIITAL, a pivotal Phase 3 trial testing EB-101 in people with recessive dystrophic epidermolysis bullosa (RDEB), according to Abeona Therapeutics, the therapy’s developer. Top-line results from VIITAL (NCT04227106) are expected before the end of November and, if positive, will support an…

The effect of epidermolysis bullosa (EB) on oral health significantly affects the quality of life of children living with the disease, a recent study highlights. “The best way to help patients with EB and meet their demands is to improve daily oral hygiene habits and preventive measures (regular dental…

A pilot trial will investigate the effects of antimicrobial spray APR-TD011 on bacterial colonization in the wounds of people with epidermolysis bullosa (EB), the therapy’s developer, Relief Therapeutics, announced. The treatment’s active ingredient is hypochlorous acid, a chemical with strong and broad-acting antimicrobial properties. It is approved and…

Genetic defects underlying junctional epidermolysis bullosa (JEB) can also cause kidney-urinary tract symptoms, a case series reports. Researchers recommend that people with JEB and attending physicians be made aware of this risk and individualize diagnostic and therapeutic strategies to manage these complications. Multicenter studies are needed to make general…

Filsuvez (Oleogel-S10) has been approved in Great Britain — England, Scotland and Wales — for treating wounds associated with dystrophic epidermolysis bullosa (DEB) or junctional epidermolysis bullosa (JEB) in patients ages 6 months and older. In addition to granting marketing authorization, Britain’s Medical Healthcare and Products Regulatory Agency (MHRA)…