For decades, NORD has pursued federal and state policies that will change the lives of Americans impacted by rare diseases for the better. NORD’s work can be viewed below. This page is updated daily to provide timely information. Please contact us if you have questions or need additional information.
CDC Response to NORD, ALS Association, Muscular Dystrophy Association, and Cystic Fibrosis Foundation Letter to CDC Director, Dr. Walensky, Requesting Additional Guidance to Ensure Rare Disease Patients Have Access to the COVID-19 Vaccine
Published: Apr 9, 2021
Tagged in: Access to Care, COVID-19
NORD joins coalition letter urging the federal government to rescind rules that weaken the beneficiary protections in the Families First Coronavirus Response Act (FFCRA)
Published: Apr 10, 2021
Tagged in: Access to Care, COVID-19
NORD, the ALS Association, Muscular Dystrophy Association and Cystic Fibrosis Foundation Letter to the Advisory Committee on Immunization Practices (ACIP), Requesting Additional Guidance to Ensure Rare Disease Patients Have Access to the COVID-19 Vaccine
Published: Mar 1, 2021
Tagged in: Access to Care, COVID-19
NORD, the ALS Association, Muscular Dystrophy Association and Cystic Fibrosis Foundation letter to CDC Director, Dr. Rochelle Walensky, requesting additional guidance from CDC to ensure rare disease patients have access to the COVID-19 vaccine
Published: Feb 17, 2021
Tagged in: Access to Care, COVID-19
Coalition Statement in Support of Medicaid Coverage Provisions in COVID-19 Relief Package
Published: Feb 11, 2021
Tagged in: Access to Care, COVID-19
Coalition Statement to the House Ways and Means committee on COVID-19 relief measures
Published: Feb 10, 2021
Tagged in: Access to Care, COVID-19
