Published February 25, 2019 by NORD
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 …
Continue reading “Connor’s Story in Honor of Rare Disease Day”
Read morePublished February 12, 2019 by NORD
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 …
Continue reading “India’s Story in Honor of Rare Disease Day”
Read morePublished February 12, 2019 by NORD
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, …
Continue reading “McCarthy Story in Honor of Rare Disease Day”
Read morePublished 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 23, 2019 by NORD
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 …
Continue reading “10 Ways to Show Your Stripes this Rare Disease Day!”
Read morePublished January 18, 2019 by NORD
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 …
Continue reading “Featured Student: Scarlett Eagle”
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 …
Continue reading “NORD IAMRARE KAT6A Patient Registry Launched”
Read morePublished January 8, 2019 by NORD
Each year on the last day of February, the rare disease community comes together on Rare Disease Day to raise awareness for millions of people who are impacted by rare …
Continue reading “Rare Disease Advocates Share Ideas for How to Mark Rare Disease Day 2019”
Read morePublished December 20, 2018 by NORD
Washington, D.C., December 20, 2018 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement on …
Continue reading “NORD Issues Statement on FDA’s Impending Expanded Access Call Center”
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