Rare Disease Day 2019 is Only 10 Weeks Away!
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Let’s get started! 10 weeks to go until Rare Disease Day! Share your plans!
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Published December 20, 2018 by NORD
Let’s get started! 10 weeks to go until Rare Disease Day! Share your plans!
Read morePublished December 18, 2018 by NORD
Washington, D.C., December 18, 2018 — A new report commissioned by the National Organization for Rare Disorders (NORD) and published today by the IQVIA Institute, demonstrates that the seven-year market …
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 December 13, 2018 by NORD
For more than 35 years, NORD has been the voice of the rare disease community. Whether it’s advocating in Washington, protecting the Orphan Drug Act, working with the FDA to …
Continue reading “Year-End Message from NORD’s President and CEO”
Read morePublished November 19, 2018 by NORD
Download NORD’s new fact sheet on the Orphan Drug Act.
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 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 25, 2018 by NORD
Washington, D.C., September 25, 2018 – The National Organization for Rare Disorders (NORD) announced today it is enhancing its Rare Disease Database which serves as a valuable source of information …
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