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 October 9, 2020
Washington, DC, October 9, 2020—On October 8 and 9, the National Organization for Rare Disorders (NORD®) virtually hosted the 2020 Rare Diseases and Orphan Products Breakthrough Summit, the first time the organization representing over 25 million Americans impacted… Read More
Written by Valaree DonFrancesco on September 24, 2020
For Immediate Release
Major Groups Representing Millions of Patients Release Telehealth Principles
September 24, 2020 – A coalition of organizations representing millions of patients who live with serious, acute, and chronic conditions has released principles to guide policymakers seeking to ensure patients can continue… Read More
