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ORDR, NCATS, Yaffa R. Rubinstein, MS, PhD has been selected for PCORI’s Advisory Panel on Rare Disease.

April 7, 2014

Yaffa R. Rubinstein, MS, PhD—Bethesda, MD Program Director, Office for Rare Diseases Research, National Center for Advancing Translational Sciences, National Institutes of Health Representing: Researchers Term ends April 2016 Yaffa R. Rubinstein is Program Director at the Office for Rare Diseases Research/National Center for Advancing Translational Sciences (NCATS)/National Institutes of Health (NIH), where she directs the NIH/NCATS GRDRSMProgram, a Global Rare Diseases Patient Registry Data Repository, and the RD-HUB, a database for biorepositories and biospecimens and led the development of the registry’s common data elements (CDEs) and the model informed consent for participating in patient registries. At NIH, she is an active member of the CDEs working group as well as disease-specific CDE working groups. She is also an active member of the European rare disease initiative, RD-Connect/IRDiRC, and a passionate supporter of rare disease patient advocacy groups and their familie

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