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Archives for: June 3rd, 2019

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

Five Years of Patient Registry Success: NORD’s IAMRARE™ Registry Program Celebrates New Partnerships and Models of Engagement  

Written by Laura Mullen on October 3, 2018

Washington, D.C., October 3, 2018—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, today is celebrating five years of patient registry success with the announcement of a new multi-stakeholder model of engagement in collaboration with the Foundation for Prader-Willi… Read More