Partnership advocates epidermolysis bullosa awareness, research

BERG, a clinical-stage biopharmaceutical company, announced it has partnered with the Dystrophic Epidermolysis Bullosa Research Association of America to support and advocate for patients and families effected by epidermolysis bullosa.

Approximately one in every 20,000 children born in the U.S. is affected by epidermolysis bullosa (EB), a rare and debilitating connective tissue disorder with many genetic and symptomatic variations. Patients with EB can experience significantly diminished quality of life, according to a news release from BERG.

Prominent symptoms of EB include extremely fragile skin that causes painful blisters and ruptures and wounds to the skin, which are prone to infection. Internal organs and bodily systems can be seriously affected. EB can lead to squamous cell carcinoma, which in some cases can be deadly before patients reach the age of 30 years, according to the release.

BERG reported that there is currently no FDA approved treatment for EB.

The Dystrophic Epidermolysis Bullosa Research Association (debra) of America is the only U.S. nonprofit providing all-inclusive support for EB, through research funding and providing free programs and services for patients with EB, according to the release.

A phase 1 clinical trial for the topical form of drug candidate BPM 31510 for treating EP is being conducted at the University of Miami Department of Dermatology and Cutaneous Surgery, according to the release. BERG and debra of America will work to raise awareness of the study, as well as share information with patients and caregivers about advanced treatment research, according to the release. The research will also be highlighted at EB conferences.

"The only options currently available for the 25,000 people living in the United States with EB and the nearly 200 children born each year are daily wound care, pain management, and protective bandaging" Brett Kopelan, executive director of debra of America, stated in the release. "The lack of treatment options considering the severity of the disease creates a desperate need in the EB patient population for access to new treatments.”

Reference: www.berghealth.com