Written by Rohan Narayanan on June 21, 2021
The National Organization for Rare Disorders (NORD), along with The ALS Association, the Cystic Fibrosis Foundation, and the Muscular Dystrophy Association recently partnered again to host a virtual conversation on COVID-19 vaccines and safety. The event featured leaders from the US Food and Drug Administration (FDA) and the Centers for Disease Control and Prevention (CDC) providing key updates and insights from the administration, as well as addressing frequently asked… Read More
Written by Heidi Ross on February 17, 2021
On February 17th, NORD, along with The ALS Association, Muscular Dystrophy Association, and Cystic Fibrosis Foundation, sent a letter to Centers for Disease Control and Prevention (CDC) Director Walensky and the Advisory Committee on Immunization Practices (ACIP) regarding the lack of clear vaccination prioritization guidance to the states for rare… Read More
Written by Valaree DonFrancesco on January 26, 2021
Washington, DC, January 26, 2021—In an effort to provide clear, useful, authoritative information to rare disease patients and caregivers on the COVID-19 vaccines, on January 15 the National Organization for Rare Disorders (NORD®), along with The ALS Association, Cystic… Read More
Written by Valaree DonFrancesco on April 20, 2020
In this time of crisis and uncertainty, NORD’s policy team has been working to pursue policies at the federal and state levels to address COVID-19 related concerns critical to the rare disease community.
Protecting Access to Necessary Medical Treatment During the Pandemic
Social distancing is critical for slowing… Read More
Written by Valaree DonFrancesco on March 5, 2020
As information on the coronavirus, which causes COVID-19, dominates the news, we want to share with you guidance from the Centers for Disease Control and Prevention (CDC). The National Organization for Rare Disorders (NORD) continues to monitor the situation with the rare community in mind. The severity of illness or… Read More
