Biopharmaceutical company BERG and the non-profit patient advocacy group Dystrophic Epidermolysis Bullosa Research Association of America (debra of America) are partnering up to help patients and families affected by epidermolysis bullosa (EB).
EB is a rare, pervasive, and debilitating connective tissue disorder with many genetic and symptomatic variations that affects approximately one in every 20,000 children born in the U.S. The condition significantly diminishes the quality of life for those dealing with the condition. Currently, there is no FDA approved treatment or cure.
A Phase I clinical trial for the topical form of BERG’s drug candidate BPM 31510 for the treatment of EB is currently being conducted at the University of Miami Department of Dermatology & Cutaneous Surgery.
BERG and debra of America will work together to raise awareness about the trial throughout the entire EB community, as well as share information with patients and caregivers about advanced treatment research. The partnership also will create a platform to elevate the EB disease profile by highlighting potential EB treatments like BPM 31510 at key EB clinical conferences, strengthen EB patient advocacy efforts with Congress, and collaborate with top scientific investigators around the world.
debra of America is the only U.S. nonprofit providing all-inclusive support to the EB community, through funding research for a treatment and cure while simultaneously providing free programs and services for those with EB.