Steve Groft helped establish the Office of Orphan Products Development at FDA in 1982. After implementing the rare diseases initiative at NIH (1989), Steve served as the Director of the Office of Rare Diseases Research (1993-2014). Activities included the Genetic and Rare Diseases Information Center, IRDiRC, ICORD, the Rare Diseases Clinical Research Network (RDCRN), and the Undiagnosed Diseases Program. He also helped stimulate global research with rare diseases and orphan products with information on clinical trials and the expanding role of patient advocacy groups as research partners, including awareness and opportunities for collaboration in the Latin American and Caribbean region.
