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March 20, 2019

TOPIC: Get Involved, Patients & Members

Hear user voices on NORD registries

Posted by Christina Jensen

During the 2018 Rare Diseases & Orphan Products Breakthrough Summit, NORD spoke with its IAMRARE registry users to get their thoughts on how their patient registries are benefiting their communities and how they are able to use the data. See the videos below and on our Youtube channel here.