Rare Disease News

Hear from NORD’s registry community

Published March 20, 2019 by NORD

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NORD IAMRARE Registry users share their thoughts on how their patient registries are benefiting their communities and how they are using the data.

Orphan Drug Act Resolution Introduced in the House of Representatives

Published March 18, 2019 by NORD

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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 …

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Rare Disease Day 2019 Notes and Successes

Published March 6, 2019 by NORD

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Your stripes were shown! See how the rare disease community worked together to make Rare Disease Day 2019 reach the world at large!

Connor’s Story in Honor of Rare Disease Day

Published February 25, 2019 by NORD

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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 …

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India’s Story in Honor of Rare Disease Day

Published February 12, 2019 by NORD

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The following story was submitted by Sarah Stuker in honor of Rare Disease Day. In this story, Sarah shares her family’s journey of searching for and receiving a diagnosis for …

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McCarthy Story in Honor of Rare Disease Day

Published February 12, 2019 by NORD

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The following story was submitted by Lindsey McCarthy in honor of Rare Disease Day. In this story, Lindsey shares her family’s journey of receiving a diagnosis for their son, James, …

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Brazeau Family Story for Rare Disease Day

Published February 1, 2019 by NORD

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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, …

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10 Ways to Show Your Stripes this Rare Disease Day!

Published January 23, 2019 by NORD

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The zebra, with its distinctive stripes, is the official symbol of rare diseases in the United States. While each of the more than 7,000 rare diseases is unique, there are …

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Featured Student: Scarlett Eagle

Published January 18, 2019 by NORD

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NORD’s Educational Initiatives team spoke with Scarlett Eagle, an undergraduate student at Iowa State University and NORD Students for Rare Club Leader. In this interview, Scarlett talks about her inspiration …

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NORD IAMRARE KAT6A Patient Registry Launched

Published January 9, 2019 by NORD

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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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