Introducing Our Champions: Dr. Stephen Groft

August 2, 2013

Being Awarded The Henri Termeer Lifetime Achievement Award
Dr. Stephen Groft, Director – National Institutes of Health, Office of Rare Diseases Research

From developing genetic tests for multiple rare diseases to creating an educational module that school children will be using all over the country—the cause for rare disease has celebrated significant achievements while Dr. Groft served as the Director of the Office of Rare Disease Research at the National Institute of Health.

After Groft received his B.S. degree in Pharmacy in 1968 and his Doctor of Pharmacy degree from Duquesne in 1979, he went on to work as a commissioned officer in the United States Public Health Services as a pharmacist in the Indian Health Service with assignments in South Dakota and Oklahoma. He then began serving the Office of Orphan Products Development at the FDA from 1982 until 1986. After which, he worked with the Department of Health and Human Services as the Executive Director of the National Commission on Orphan Diseases.  In 1991, Groft served as the first acting Director of the Office of Alternative Medicine at the NIH and in 2002 completed an assignment as the Executive Director of the White House Commission on complementary and alternative medicine policy.

Today his work at the National Institute of Health has contributed significant improvements in the lives of those with rare diseases. Over 465 disease-related, scientific workshops and conferences have been co-sponsored by the office. They also recently completed the first phase towards completion of the Rare Diseases Clinical Research Network.

“Steve Groft is a visionary catalyst for rare disease research,” says long-time associated, Dr. John Gallin. “Many of the ideas and programs now being embraced around the world were put forth by Steve 20 to 25 years ago. He continues to push for change – ideas that will probably be part of the rare disease roadmap for the next quarter century. Steve also made a huge impact on the culture of collaboration here at NIH. Armed with only a handful of employees and a relatively small budget, Steve has managed to leverage those resources along with the cooperation of Institute and Center Directors to develop, among other things, a robust program to support rare disease scientific conferences, the Rare Diseases Clinical Research Network, the intramural bench-to-bedside awards, and, most recently, the Undiagnosed Diseases Program.”

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