Rare Disease Report

New Partnership Between BERG and debra of America Fights Epidermolysis Bullosa

MAY 15, 2017
Mathew Shanley
Earlier today, BERG announced their new partnership with The Dystrophic Epidermolysis Bullosa Research Association of America (debra of America), with the intention to fight epidermolysis bullosa (EB).

EB is a rare pervasive, and debilitating connective tissue disorder that has many hereditary and symptomatic variations, each of which has been known to significantly diminish quality of life for its patients.

It currently affects an estimated 1 in every 20,000 children born in the United States. The biopharmaceutical company’s new association with debra of America will provide both support and advocacy for patients and families affected by EB.

"We are honored to partner with debra of America, which underscores our commitment to increasing attention around epidermolysis bullosa and addressing the high unmet needs of the EB community," said Niven R. Narain, Co-founder, President, and CEO of BERG. "We are proud to use our expertise and innovative research platforms to provide a better understanding of the condition and to hopefully expand treatment options in a very devastating disease for patients and their families."

The most prominent symptom in all variations of EB is tremendously delicate skin that can cause tender blisters and devastating ruptures and other wounds. These ruptures and wounds are prone to infection, but internal organs and bodily systems can also be affected by the disease.

There is currently no FDA-approved treatment or cure, and debra of America is the lone U.S. nonprofit providing all-inclusive support to the community. The non-profit funds research for a treatment while also providing free programs and services for patients and their families.

"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" said Brett Kopelan, Executive Director of debra of America and father to a nine-year-old with a severe form of the disease.

"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," explained Kopelan. "Based on encouraging research results that BERG has already presented, we are extremely hopeful that their pioneering approach to drug development will create meaningful advancements that positively impact the EB community. We very much look forward to working together to improve the quality of life for people living with EB, their families, and caregivers."

The University of Miami Department of Dermatology & Cutaneous Surgery is currently conducting a Phase I clinical trial for the topical form of BERG’s drug candidate BPM 31510 for the treatment of EB, and the BERG and debra of America partnership will create a platform to elevate EB and potential treatments like BPM 31510.

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