Published March 8, 2019 by NORD
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 …
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Read morePublished March 8, 2019 by NORD
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 …
Continue reading “NORD IAMRARE APS Type 1 Patient Registry Launched”
Read morePublished October 9, 2018 by NORD
Yesterday, a NORD Member Organization and IAMRARE™ Registry Client, Congenital Hyperinsulinism International (CHI), officially launched their patient registry, HI Global Registry. NORD’s IAMRARE Registry Program was built to address the …
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Read morePublished October 3, 2018 by NORD
Listen to recent comments from Janet Woodcock, Director CDER, FDA on NORD and the importance of natural history registries for rare disorders.
Read morePublished September 12, 2018 by NORD
1. Raves About the Rare Summit “Inspiring and Informative. Brought me to the realization that though I may feel my ‘disease’ is the only one – there are many who …
Continue reading “Three Big Reasons Not to Miss the 2018 NORD Rare Summit”
Read morePublished September 11, 2018 by NORD
Washington, D.C., September 11, 2018—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, has announced the addition of ten …
Read morePublished July 26, 2018 by NORD
Editor’s Note: During the week of July 23-27, 2018, NORD featured pheochromocytoma as the Rare Disease of the Week in order to raise awareness for this rare type of cancer. …
Continue reading “Giving Spotlight: Honoring Mom-Mom’s Legacy with Research and Awareness”
Read morePublished July 19, 2018 by NORD
Watch the latest release from NORD’s RareEDU™ on gene therapy.
Read morePublished July 11, 2018 by NORD
Dr. Scott Gottlieb was sworn in as the 23rd Commissioner of Food and Drug Administration in 2017, and provided a keynote speech at the NORD Rare Summit shortly thereafter. 2018 …
Read morePublished June 27, 2018 by NORD
NORD’s Rare Disease of the Week is Levy-Yeboa Syndrome, a very rare inherited, multi-system disorder. For more information about this disorder, you can visit the Levy-Yeboa Syndrome Rare Disease Report here. The …
Continue reading “Spencer and Levy-Yeboa Syndrome, the Story of Our Son”
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