Brett Kopelan, M.A.

Mr. Kopelan was initiated into the world of rare diseases 18 years ago when his daughter was born with a severe form of recessive dystrophic epidermolysis bullosa (RDEB). Shortly after her birth, he was elected to the board of directors of the Dystrophic Epidermolysis Bullosa Research Association of America (debra of America), the only national not-for-profit providing all-inclusive support to the EB community. He became the chief executive officer of the organization in January 2011 and has worked closely with industry and the FDA in shepherding three drugs through the regulatory pathway to approvals, including the first re-dosable gene therapy and the first autologous gene mediated cell therapy. He also works extensively with elected officials in the House and Senate to ensure policies and legislation for those with rare diseases are enacted.

Prior to his work in rare disease, Mr. Kopelan was an accomplished entrepreneur, starting three 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.

Mr. Kopelan currently serves as chairman of the board of directors of the Foundation for Cell & Gene Medicine, as a member of the Board of Directors of the Alliance for Regenerative Medicine, and on the board of the Wound Care Collaborative Community. He formerly served as president of the board of directors of Debra International (a consortium of 55 nongovernmental organizations dedicated to curing EB), vice president and secretary of a 52-year-old financial services firm’s board of directors, as well as both the chairman of the board of directors and treasurer of the National Organization for Rare Disorders (NORD) and president of the board of directors of the Coalition of Skin Diseases.