Executive Director, debra of America
President of the Board of Directors,
Coalition of Skin Diseases.
Brett Kopelan was initiated into the world of rare diseases ten years ago when his daughter was born with a severe form of recessive dystrophic epidermolysis bullosa (RDEB). Shortly after her birth, Brett was elected to the board of directors of the Dystrophic Epidermolysis Bullosa Research Association of America (debra of America). Upon returning to New York City after his daughter was the 8th child in the world to undergo a stem cell transplant in hopes of treating her RDEB, he became the Executive Director of debra of America, the only national not-for-profit providing all-inclusive support to the EB community. He currently serves as: President of the board of directors of the Coalition of Skin Diseases; Treasurer on the board of directors of debra international (a consortium of 55 nongovernmental organizations dedicated to curing EB); and, Secretary on a 50 year old financial services firm’s board of directors. Brett also formerly served as both the Chairman of the board of directors, and as the treasurer of the National Organization for Rare Disorders (NORD).
Prior to his rare disease work, Brett was an accomplished entrepreneur, starting three different companies raising more than $30 million in venture financing, where he led business development and marketing. He has a graduate degree from Columbia University and an undergraduate degree from New York University.