In recent years, NORD has provided Patient Assistance Programs to assist the Chronic Granulomatous Disease (CGD), Cystinosis and Urea Cycle Disorders (UCD) communities. As of Monday, March 18, we are delighted …
Today, Representatives GK Butterfield and Gus Bilirakis introduced a resolution that celebrates the success of the Orphan Drug Act (ODA) and calls for continued support of the legislation. Now in …
Washington, DC, March 12, 2019—The National Organization for Rare Disorders (NORD) today announced the individuals, organizations and industry innovators who will be honored for their outstanding work in support of …
Last week, a NORD Member Organization and IAMRARE™ Registry Client, GBSCIDP Foundation, officially launched their patient registry, GBS|CIDP Patient Registry. NORD’s IAMRARE Registry Program was built to address the special needs of those …
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 …
Astellas is proud to support Rare Disease Day and is actively committed to raising awareness about rare diseases and their impact on patients, their families and caregivers. Astellas’ dedication to patients …
The following story was submitted by Katia Luedtke in honor of Rare Disease Day. In this story, Katia shares her family’s journey of searching for and receiving a diagnosis for …
NORD marks 10 years as official U.S. Rare Disease Day sponsor Since the Rare Disease Day campaign was first launched internationally by EURORDIS and its Council of National Alliances in …