Written by Laura Mullen on March 19, 2019
In recent years, NORD has provided Patient Assistance Programs to assist the Chronic Granulomatous Disease (CGD), Cystinosis and Urea Cycle Disorders (UCD) communities. As of Monday, March 18, we are delighted to announce an expansion to the support we are able to provide to these communities. See… Read More
Written by Laura Mullen on March 1, 2019
A few weeks ago, we asked the community what some misconceptions were about living with a rare condition. The Mighty collected your responses and published them in the article below on February 28 for #RareDiseaseDay.
On World Read More
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
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
Written by Christina Jensen on January 8, 2019
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