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Archives for: October 9th, 2018

NORD IAMRARE HI Global Registry Launched

Written by Christina Jensen on October 9, 2018

Yesterday, a NORD Member Organization and IAMRARE™ Registry Client, Congenital Hyperinsulinism International (CHI), officially launched their patient registry, HI Global Registry. NORD’s IAMRARE Registry Program was built to address the special needs of those developing treatments for rare diseases with extensive input from FDA, NIH,… Read More

Patient Registries Webinar: What They Are and How to Start One

Written by Christina Jensen on May 1, 2018

Have you heard of a patient or natural history registry but have no idea what it was? Interested in starting a registry for your patient population but not sure where to start?

We will cover these topics and more in an educational webinar on May 1. NORD’s Research Programs Manager, Suzanne… Read More