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Archives for: February 1st, 2019

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

NORD Issues New Rare Disease DayⓇ Rallying Cry: Show Your Stripes™!

Written by Christina Jensen on January 16, 2019

Washington, DC, January 16, 2019–The National Organization for Rare Disorders (NORD)Ⓡ, the leading independent nonprofit organization representing the 25-30 million Americans living with rare diseases, has announced a new campaign for Rare Disease Day centering on three simple words: Show Your Stripes, with a call to action for… Read More

NORD Expands and Enhances its Rare Disease Database®, a Primary Resource for Millions of People Affected by Rare Diseases

Written by Laura Mullen on January 3, 2019

Washington, D.C., January 3, 2019 – Today, the National Organization for Rare Disorders (NORD) announced the completion of extensive additions and improvements to its Rare Disease Database, which serves as a valuable resource for patients, families and caregivers in need of easy-to-understand information about rare diseases. The enhancements… Read More