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.
NORD joins letter to Congressional leadership along with 54 patient organizations asking that provisions to improve medication access in emergencies is included in upcoming pandemic preparedness legislation.
Published: Jul 27, 2021
Tagged in: COVID-19
NORD Submits Comments to Reps. DeGette and Upton on 21st Century Cures 2.0 Discussion Draft
Published: Jul 26, 2021
Tagged in: Access to Affordable, Adequate Coverage, Access to Affordable Medicines, Access to Diagnostics, Access to Innovative Medicines and Therapies, Advancing Rare Disease Research and Regulatory Science, COVID-19
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 Submits Letter of Supporting Telehealth for House Energy & Commerce Health Subcommittee Hearing: The Future of Telehealth: How COVID-19 Is Changing the Delivery of Virtual Care
Published: Mar 2, 2021
Tagged in: COVID-19, Telehealth
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
