Published February 1, 2019 by NORD
The following story was submitted by Kirk Brazeau in honor of Rare Disease Day. In this story, Kirk shares his family’s journey of receiving a diagnosis for their son, Archer, …
Continue reading “Brazeau Family Story for Rare Disease Day”
Read morePublished January 16, 2019 by NORD
Get ready to #ShowYourStripes for Rare Disease Day, the biggest day of the year for the rare disease community.
Read morePublished January 9, 2019 by NORD
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 …
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Read morePublished December 17, 2018 by NORD
This June in Houston, Texas, the 2019 Living Rare, Living Stronger | NORD Patient & Family Forum will bring the rare community together with physicians, medical students and allied health …
Read morePublished October 31, 2018 by NORD
One of NORD most popular resources is the Rare Disease Database. In any given month, 80% of the traffic to the website goes to one of NORD’s Rare Disease Reports. …
Continue reading “NORD Creates Rare Disease Patient & Caregiver Resource Center”
Read morePublished October 11, 2018 by NORD
NORD’s Director of State Policy Tim Boyd participated in a press briefing on copay accumulators yesterday, which was followed by the issuance of the following press release that includes links …
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 …
Continue reading “NORD IAMRARE HI Global Registry Launched”
Read morePublished October 8, 2018 by NORD
NORD has published a Request for Proposals inviting accredited CME providers to respond with proposals by Nov. 16th.
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 August 29, 2018 by NORD
Washington, D.C., August 29, 2018 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, has announced some of …
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