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Policy Statements

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.

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Policy Statements

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
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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
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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
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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
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