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
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
Each year on the last day of February, the rare disease community comes together on Rare Disease Day to raise awareness for millions of people who are impacted by rare diseases.
This year’s Rare Disease Day is just 51 days away! As the Official… Read More
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
Washington, D.C., December 18, 2018 — A new report commissioned by the National Organization for Rare Disorders (NORD) and published today by the IQVIA Institute, demonstrates that the seven-year market exclusivity granted to drugs designated under the Orphan Drug Act of 1983 for rare diseases is working as… Read More
