Written by Lisa Sencen on February 25, 2019
The following story was submitted by Katia Luedtke in honor of Rare Disease Day. In this story, Katia shares her family’s journey of searching for and receiving a diagnosis for their son, Connor, of Snyder-Robinson Syndrome (SRS).
Share your story for Rare Disease Day here.
Our… Read More
Written by Lisa Sencen on February 13, 2019
NORD marks 10 years as official U.S. Rare Disease Day sponsor
Since the Rare Disease Day campaign was first launched internationally by EURORDIS and its Council of National Alliances in 2008, thousands of events have… Read More
Written by Lisa Sencen on January 23, 2019
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
Written by Lisa Sencen 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 Lisa Sencen 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