Written by Valaree DonFrancesco on February 28, 2020
Washington, DC, February 28, 2020—The National Organization for Rare Disorders (NORD)®, the leading independent nonprofit organization representing over 25 million Americans with rare diseases, today launched the Undiagnosed Rare Disease Registry, a new study to collect de-identified information about hard-to-solve medical cases that will enable researchers to perform analyses at… Read More
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
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
Written by Lisa Sencen on March 8, 2019
Last week, a NORD Member Organization and IAMRARE™ Registry Client, The APS Type 1 Foundation Inc., officially launched their patient registry, APS Type 1 (APECED) Registry. NORD’s IAMRARE Registry Program was built to address the special needs of those developing treatments for rare… Read More
Written by Lisa Sencen on January 9, 2019
Yesterday, a NORD Member Organization and IAMRARE™ Registry Client, KAT6A, officially launched their patient registry, KAT6A 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 the field. We… Read More
