Teresa Carvalho, MS, science writer —

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…

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…

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 pivotal Phase 3 VIITAL clinical trial of EB-101, Abeona Therapeutics’ experimental cell therapy for wound healing in people with recessive dystrophic epidermolysis bullosa (RDEB), has met its enrollment target. The company also announced that top-line results from the VIITAL trial (NCT04227106) are expected…

Horizon Therapeutics has launched its #RAREis Representation program aimed at increasing diversity, equity, and inclusion among patients with rare diseases. There are about 400 million people worldwide living with a rare disease; for many of them, access to diagnosis, care, and treatments can be challenging. Accessing better care depends on…

Horizon Therapeutics has launched its #RAREis Representation program aimed at increasing diversity, equity, and inclusion among patients with rare diseases. There are about 400 million people worldwide living with a rare disease; for many of them, access to diagnosis, care, and treatments can be challenging. Accessing better care depends on…