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Archives for: June 21st, 2021

Continuing the Conversation: FDA and CDC Leaders Discuss Vaccines and the Pandemic

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

NORD and Other Patient Advocacy Groups Issue Letter on Lack of Clear COVID-19 Vaccination Prioritization Guidance to the States for Rare Disease Patients

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

Update on NORD’s Recent Advocacy Work on COVID-19 for the Rare Community

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