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NORD Announces Four Patient Organizations to Join the IAMRARE Community and Submit Data to RDCA-DAP

The Rare Disease Cures Accelerator–Data and Analytics Platform (RDCA-DAP®) is an integrated database and analytics hub developed by Critical Path Institute (C-Path) and NORD through a collaborative grant from the U.S. Food and Drug Administration (FDA). Its goal is to aggregate and standardize data from rare disease patients, then put that data in the hands of researchers working to advance knowledge and treatments for rare diseases.


As part of this effort, four rare disease patient advocacy organizations have been awarded the opportunity to join the IAMRARE Program and, with education and support from NORD, will design and implement a natural history study. The data collected will then be included in RDCA-DAP.


NORD received many strong applications from qualified rare disease organizations in this round. The four organizations selected were prioritized based on their organizational capacity and readiness to begin quickly submitting their existing data to RDCA-DAP and taking advantage of this opportunity.

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