Anne Pariser, MD, Director of the NCATS’ Office of Rare Diseases Research (ORDR), provides an overview of the ORDR and the research they are involved with. 

The ORDR is focused on multiple programs to improve the efficacy of rare disease research. Their two largest programs are the Rare Diseases Clinical Research Network (RDCRN) and the Genetic and Rare Diseases Information Center (GARD).

RDCRN provides support for clinical studies and facilitates collaboration, study enrollment and data sharing. Through the RDCRN consortia, researchers work with patient advocacy groups to study over 200 rare diseases at sites across the nation.

GARD provides the public with up-to-date health information on many rare diseases. It has a hotline that people (often parents) can call and ask questions about a particular rare disease.

Numerous other programs are led but the Office of Rare Diseases Research, including the annual “Rare Disease Day at NIH” event held the end of February. 

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