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 disease patients whose conditions may put them at higher risk for COVID-19. NORD urges the CDC to clarify their position and encourage states to allow patients with rare diseases that put them at risk of severe COVID-19 to receive the vaccine at an appropriate time.

Read the letter in its entirety.