Written by Rohan Narayanan on February 28, 2022
NORD, the official US sponsor of Rare Disease Day, is a leading voice raising awareness among the public and decision-makers about the challenges faced by the rare disease community
February 28, 2022, Washington, DC – Today is Rare Disease Day, a global celebration to raise awareness among the public and decision-makers… Read More
Written by Rohan Narayanan on February 22, 2022
Our journey to the rare disease community was somewhat lengthy, as it is for many families. The day my son Rowan was born we knew something was wrong, but it took 21 extremely long months of back-to-back testing to simply give… Read More
Written by Rohan Narayanan on February 18, 2022
The following is a guest post from Tamar Thompson, Head of Corporate Affairs, Alexion.
Each year, on the last day of February, Alexion joins together with all those in the rare disease community to recognize Rare Disease Day, a global event led by EURORDIS that aims to raise awareness of… Read More
Written by Rohan Narayanan on February 17, 2022
Organizations and individuals from across the country are partnering with NORD to help make a difference for rare disease patients and families on Rare Disease Day 2022
February 17, 2022, Washington, DC – Leading up to Rare Disease Day on Monday, February 28, the National Organization for Rare Disorders (NORD) is… Read More
Written by Maia Craig on December 14, 2021
Rare Disease Day is a day of awareness for the over 7,000 rare diseases that impact over 300 million people globally!
As the US sponsor for Rare Disease Day, NORD is leading the call to light up the country in rare disease colors and unite both the rare disease community and the country as a whole. The more buildings, landmarks and… Read More