Stephen C. Groft, Pharm. D.

Steve is a Senior Advisor to the Director, NCATS at NIH. He helped establish the Office of Orphan Products Development at FDA in 1982, a rare diseases initiative at NIH in 1989, Director of the Office of Rare Diseases Research (ORDR) from 1993-2014. Activities included the development of the Genetic and Rare Diseases Information Center (GARD), IRDiRC, ICORD, the RDCRN, assistance with the Undiagnosed Diseases Program and expanding the ICD XI to include more rare diseases.

His major focus has been on stimulating research with rare diseases and orphan products and developing information for patients, families, health care providers, research investigators, the biopharmaceutical industry, and the public. The emphasis included information about rare diseases, active and completed clinical trials, ongoing research, and patient advocacy groups. He has authored 85 journal articles, book chapters and the co-editor of 2 books on Rare Diseases Epidemiology. He has also made more than 320 presentations on rare diseases.


Contact Information:
Stephen C. Groft, Pharm.D.
Senior Advisor to the Director
National Center for Advancing Translational Sciences, NIH
6701 Democracy Boulevard, Room 998
Bethesda, MD 20892-4874
Phone: 301-435-0771 (Office)