Stephen C. Groft

Stephen is the Director of the Office of Rare Diseases Research (ORDR) in the National Center for Advancing Translational Sciences at the National Institutes of Health (NIH). His major focus is on stimulating research with rare diseases and developing information about rare diseases and conditions for health care providers and the public.  To help identify research opportunities and establish research priorities, the Office has co-sponsored over 1200 rare diseases-related scientific conferences with the NIH research Institutes and Centers.  Current activities include establishing patient registries for rare diseases, developing an inventory of available bio-specimens from existing bio-repositories, developing an educational module on rare diseases for middle school children, establishing a public information center on genetic and rare diseases, developing an international rare diseases research consortium, maintaining the Rare Diseases Clinical Research Network,  and providing a special emphasis clinic with senior clinical staff for patients with undiagnosed diseases at NIH’s Clinical Research Center Hospital.


Steve received the B.S. degree in Pharmacy in 1968 and the Doctor of Pharmacy degree from Duquesne University in 1979.

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