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About ORDR

The Office of Rare Diseases Research (ORDR) was established in 1993 within the Office of the Director of the National Institutes of Health (NIH), the Federal focal point for biomedical research. Public Law 107-280, the Rare Diseases Act of 2002, established the ORDR by statute. In 2011,  ORDR was integrated into the newly established National Center for Advancing Translational Sciences (NCATS). As an integral part of NCATS, ORDR coordinates and supports rare diseases research, responds to research opportunities for rare diseases, and provides information on rare diseases.
The goals of ORDR are to identify, stimulate, coordinate  and support research to respond to the needs of patients who have any one of the approximately 7,000 rare diseases known today. To leverage its resources, ORDR fosters collaboration nationally and internationally. ORDR:
  • Supports with NIH Institutes and Centers (ICs) the Rare Diseases Clinical Research Network (RDCRN).
  • Supports the Global Rare Diseases Patient Registry and Data Repository (GRDR), a patient registry and data repository with fully developed Common Data Elements.
  • Supports the development and implementation of a publicly accessible database of human biospecimen repositories, the Rare Diseases Human Biospecimens/Biorepositories (RD-HuB).  
  • Partners in rare diseases research within NIH ICs, other parts of the Federal government, and with all components of the rare diseases community, including industry, academia, and patient support organizations.
  • Identifies and responds to scientific opportunities and builds international research collaborations.
  • Supports an extensive scientific conferences program in collaboration with the NIH Institutes and Centers.
  • Cosponsors, with the NHGRI, the Genetic and Rare Diseases Information Center.
  • Provides opportunities for patient support groups to become partners with the NIH, to better understand NIH research programs, and to gain better access to NIH research opportunities.
  • Determines barriers, needs, and scientific opportunities and develops collaborative solutions.

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