Henrietta Hyatt-Knorr is a senior program and policy analyst in the NCATS Office of Rare Diseases Research. She co-developed and currently serves as task leader of the NCATS Genetic and Rare Diseases Information Center program. Hyatt-Knorr has worked more than 35 years in health research and related areas, of which 18 years have been spent at NIH. She began her NIH career as a departmental management intern at the National Heart, Lung, and Blood Institute. During her career, she also has served in the NIH Office of Rare Diseases Research as the director of policy and program planning and as its acting director. Before joining NIH, Hyatt-Knorr was the deputy executive director of the National Bioethics Advisory Commission, staff director and executive secretary of the Commission on Research Integrity, and assistant to the director of the National Commission on Orphan Diseases.
Hyatt-Knorr received a B.A. in psychology and sociology and an M.A. in sociology after a teaching fellowship at George Washington University.
Hyatt-Knorr’s professional interest in rare diseases and palliative care resulted from personal experience. She realized that, when prolonged serious illness strikes, patients and their families and friends need the most up-to-date, valid, reliable information in non-medical terms. Hyatt-Knorr has volunteered in hospice care and likes to take seasonal flowers and organic vegetables from her garden to nursing homes and people in crisis.