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Archives for: February 1st, 2019

Brazeau Family Story for Rare Disease Day

Written by Lisa Sencen 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

NORD 35th Anniversary Blog Series: The Early Years (1980s)

Written by Jennifer Huron on May 7, 2018

2018 is a big year for the rare disease community – NORD is celebrating its 35th anniversary.  For the past 35 years, NORD has taken pride in being the rare disease community’s biggest advocate.  Our policy, research and other efforts have played a significant role over the years, advocating for… Read More