Published 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 8, 2019 by NORD
The following story was submitted by Danika Amott in honor of Rare Disease Day. In this story, Danika shares her family’s journey of receiving a 17q24.2-17q24.3 unnamed deletion and Carney …
Continue reading “Ana’s Story for 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 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 August 15, 2018 by NORD
Washington, D.C., August 15, 2018 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, and Healthline Media, the …
Continue reading “Healthline and NORD Announce Recipients of 2018 Stronger Scholarships”
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”
Read morePublished July 26, 2018 by NORD
Editor’s Note: During the week of July 23-27, 2018, NORD featured pheochromocytoma as the Rare Disease of the Week in order to raise awareness for this rare type of cancer. …
Continue reading “Giving Spotlight: Honoring Mom-Mom’s Legacy with Research and Awareness”
Read morePublished July 9, 2018 by NORD
The Joshua Frase Foundation (JFF) is a non-profit organization founded with a simple yet seemingly unattainable vision: to find a cure for Myotubular Myopathy (MTM). The journey towards a cure …
Read morePublished June 27, 2018 by NORD
NORD’s Rare Disease of the Week is Levy-Yeboa Syndrome, a very rare inherited, multi-system disorder. For more information about this disorder, you can visit the Levy-Yeboa Syndrome Rare Disease Report here. The …
Continue reading “Spencer and Levy-Yeboa Syndrome, the Story of Our Son”
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