13th edition


December 3rd & 4th, 2024


December 11th& 12th 2024


Tiina K. Urv

Program Director Office of Rare Diseases Research
USANIH – NCATS – National Center for Advancing Translational Sciences

Tiina Urv currently serves as the director of the Extramural Research Program in the Office of Rare Diseases Research (ORDR). She leads the Rare Diseases Clinical Research Network (RDCRN), a multidisciplinary national program. As the lead of RDCRN program, Tiina collaborates with 10 NIH Institutes to manage 22 consortia and a central Data Management Coordinating Center (link is external). The RDCRN has more than 200 participating sites in 17 countries and more than 100 Patient Advocacy Groups as research partners and conducts research on about 200 rare diseases. Before joining the ORDR, Urv was a program director in the Division of Clinical Innovation where she provided stewardship for multiple Clinical and Translational Science Awards Program hubs and worked with the Trial Innovation Network as well as NCATS’ ORDR.

Tiina came to the National Institutes of Health (NIH) in October 2006, working as a program director at the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) in the Intellectual and Developmental Disabilities Branch. Prior to joining NIH, she was an assistant professor at the University of Massachusetts Medical School’s Eunice Kennedy Shriver Center and a research scientist at the New York State Institute for Basic Research in Developmental Disabilities. At NICHD, Tiina coordinated the Hunter Kelly Newborn Screening Research Program, chaired the trans-NIH Fragile X research program, and managed a diverse portfolio of basic, behavioral and bio-behavioral research related to developmental disabilities and rare diseases.

Tiina is a developmental disabilities specialist with a Ph.D. from Columbia University. She earned her undergraduate degree from the University of Washington.

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