New video from NORD and C-Path addresses the question: “What is a Registry?”
Written by Valaree DonFrancesco on June 2, 2020
NORD AND TRIO HEALTH PUBLISH NEW BOOK TO PROVIDE CRITICAL PATIENT INSIGHTS INTO THE BURDEN OF LIVING WITH AND TREATING RARE DISEASES
Written by Lisa Sencen on June 3, 2019
Real-world evidence and compelling case studies bring to life the challenges facing the estimated 30 million Americans fighting to live better with rare disorders
Washington, DC, June 3, 2019—The National Organization for Rare Disorders® (NORD), the leading independent nonprofit… Read More
NORD IAMRARE DHPS Patient Registry Launched
Written by Lisa Sencen on April 26, 2019
Yesterday, a NORD Member Organization and IAMRARE™ Registry Client, The DHPS Foundation, officially launched their patient registry, DHPS Patient 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, patients, organizations and experts in… Read More
Hear from NORD’s registry community
Written by Lisa Sencen on March 20, 2019
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… Read More
NORD IAMRARE GBS|CIDP Patient Registry Launched
Written by Lisa Sencen on March 8, 2019
Last week, a NORD Member Organization and IAMRARE™ Registry Client, GBS\CIDP Foundation, officially launched their patient registry, GBS|CIDP Patient 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