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Archives for: February 13th, 2019

McCarthy Story in Honor of Rare Disease Day

Written by Christina Jensen on February 12, 2019

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, of a CNTNAP1 mutation. Read on to learn how the McCarthy’s have worked to find other families who… Read More

Brazeau Family Story for Rare Disease Day

Written by Christina Jensen on February 1, 2019

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, of Recessive Dystrophic Epidermolysis Bullosa (RDEB). Read on for a harrowing account on hearing about a… Read More

10 Ways to Show Your Stripes this Rare Disease Day!

Written by Christina Jensen on January 23, 2019
rare disease day show your stripes campaign

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 many commonalities that unite our community. To raise awareness around rare disease issues, NORD is promoting specific ways that individuals,… Read More