We extend our sincere appreciation to Stephen Groft for his congratulatory address and for recognizing the significant work of the Institute for Rare Diseases on the occasion of our 20th anniversary. This significant event will be celebrated at the XV National Conference on Rare Diseases and Orphan Drugs, taking place on September 13-14, 2024, in Plovdiv. His acknowledgment is deeply valued and highlights our steadfast dedication to advancing research and enhancing care for patients with rare diseases.
Stephen Groft 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.