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Patient Stories

Ana’s Story for Rare Disease Day

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 Complex diagnosis for… Read More

Brazeau Family Story for Rare Disease Day

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,… Read More

Featured Student: Scarlett Eagle

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 for starting… Read More

Healthline and NORD Announce Recipients of 2018 Stronger Scholarships

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 second largest… Read More

NORD Invites Video Submissions on Advocacy Experience

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 for video submissions on… Read More