Published 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 …
Continue reading “NORD IAMRARE KAT6A Patient Registry Launched”
Read morePublished December 20, 2018 by NORD
Let’s get started! 10 weeks to go until Rare Disease Day! Share your plans!
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 November 9, 2018 by NORD
NORD’s Educational Initiatives team spoke with Jennifer Shoskes, a Northeastern University graduate student and NORD Student Chapter Leader. In this interview, Jennifer talks about her inspiration for starting a NORD …
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Read morePublished September 20, 2018 by NORD
Make your choice from this menu of thought-provoking, informative Lunch & Learn sessions available for attendees of the 2018 NORD Rare Summit. With only 25 days to go, be sure …
Continue reading “Chat, Chew, and Be Challenged! Lunchtime Learning at the NORD Rare Summit”
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 …
Read morePublished August 9, 2018 by NORD
Dear Reader, I want to invite you to join me and 700 others from the rare disease community at our annual Summit. This year, NORD’s 2018 Rare Diseases and Orphan …
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Read morePublished August 1, 2018 by NORD
Washington, D.C., August 1, 2018 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, has issued a call …
Continue reading “NORD Invites Video Submissions on Advocacy Experience”
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