On May 14th, at the Mellon Auditorium in Washington DC, more than 500 people celebrated the 30th anniversary of The Orphan Drug Act as well as the founding of the National Organization for Rare Disorders (NORD), a national federation of rare diseases patient advocacy groups.
In a moving ceremony, Stephen C. Groft, PharmD, the director of the Office of Rare Diseases Research at the National Center for Advancing Translational Sciences (NCATS), received NORD's Medal of Honor for "Vision and Pioneering Guidance" in rare diseases and research. He was lauded for "providing guidance and encouragement to rare disease patient advocates since the very beginning of this movement. Peter Saltonstall, NORD's President and CEO, commented that Dr. Groft "was honored as one of those individuals who have played an important and continuing role in the evolution of both [the Orphan Drug Act and NORD]."
Originally at the FDA, Dr. Groft worked under Marion Finkel, MD, the first director of the FDA's Office of Orphan Products Development, was Executive Director of the National Commission on Orphan Diseases, and has led the Office of Rare Diseases Research first at NIH/OD, and now at NCATS, since its inception.
