[待更新] The Dystrophic Epidermolysis Bullosa Research Association of America (debra), the only national non-profit dedicated to funding research and providing services and programs for those with Epidermolysis Bullosa, EB - 'the worst disease you've never heard of.' Founded***and headquartered in New York City.. The worst forms of EB lead to eventual disfigurement, disability and often early death. There are...