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Archives for: February 28th, 2020

NORD Launches Natural History Study for Undiagnosed Rare Diseases

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

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

NORD IAMRARE KAT6A Patient Registry Launched

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