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.