Policy Statements & Letters to Policymakers

For decades, NORD has pursued federal and state policies to improve the lives of Americans impacted by rare diseases. This page is updated daily to provide timely information on our policy efforts. Please contact [email protected] if you have questions or need additional information. 

American Plasma Users Coalition (APLUS) letter to Congress regarding patient protections

Published: Mar 7, 2017
Tagged in: Access to Affordable, Adequate Coverage Affordable Care Act

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Coalition for Accessible Treatments (CAT) letter to Congress regarding ACA Cost Sharing

Published: Mar 7, 2017
Tagged in: Access to Affordable, Adequate Coverage Affordable Care Act

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Coalition healthcare reform principles

Published: Mar 6, 2017
Tagged in: Access to Affordable, Adequate Coverage Affordable Care Act

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Coalition letter in support of CT HB 7118, an act calling for prescriber communication with regard to biosimilars

Published: Mar 1, 2017
Tagged in: Access to Affordable Medicines Biosimilars

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Coalition letter to President Trump regarding rare diseases and the hiring freeze

Published: Feb 27, 2017
Tagged in: Advancing Rare Disease Research and Regulatory Science

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NORD Principles for Health Coverage Reform

Published: Feb 23, 2017
Tagged in: Access to Affordable, Adequate Coverage Affordable Care Act

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NORD State Ambassador testimony before the Connecticut General Assembly’s Public Health Committee supporting HB 6009, an act to establish a Rare Disease Advisory Council

Published: Feb 22, 2017
Tagged in: Rare Disease Advisory Councils (RDACs)

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NORD letter in support of New Mexico Senate Bill 180 and House Bill 260, acts calling for prescriber communication with regard to biosimilars

Published: Feb 17, 2017
Tagged in: Access to Affordable Medicines Biosimilars

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NORD letter in support of Alabama House Bill 82, an act calling for prescriber communication with regard to biosimilars

Published: Feb 15, 2017
Tagged in: Access to Affordable Medicines Biosimilars

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Coalition letter urging Congress to preserve funding for programs that provide critical support to state newborn screening programs

Published: Feb 10, 2017
Tagged in: Access to Diagnostics Newborn Screening

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Coalition letter urging Congress to provide ample funding to combat the Zika virus

Published: Feb 10, 2017
Tagged in: Advancing Rare Disease Research and Regulatory Science

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Coalition letter to New Jersey Legislature regarding patient out-of-pocket costs for prescription medications

Published: Feb 10, 2017
Tagged in: Access to Affordable, Adequate Coverage Out of Pocket Prescription Drug Costs

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NORD letter on preexisting conditions insurance protections

Published: Feb 9, 2017
Tagged in: Access to Affordable, Adequate Coverage Affordable Care Act

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Coalition letter to President Trump regarding vaccine safety

Published: Feb 7, 2017
Tagged in: Access to Innovative Medicines and Therapies

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NORD letter in support of South Carolina Senate Bill 299 and South Carolina House Bill 3438

Published: Feb 3, 2017
Tagged in: Access to Affordable Medicines Biosimilars

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NORD letter in support of Nebraska Legislative Bill 481

Published: Feb 3, 2017
Tagged in: Access to Affordable Medicines Biosimilars

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NORD letter in support of Alaska Senate Bill 32

Published: Feb 3, 2017
Tagged in: Access to Affordable Medicines Biosimilars

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NORD letter in support of Kansas House Bill 2107

Published: Jan 24, 2017
Tagged in: Access to Affordable Medicines Biosimilars

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NORD letter in support of Montana House Bill 233

Published: Jan 18, 2017
Tagged in: Access to Affordable Medicines Biosimilars

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NORD comments to FDA on the Center for Devices and Radiological Health’s (CDRH) establishment of the Patient and Care-Partner Connection (P&CC)

Published: Jan 6, 2017
Tagged in: Access to Innovative Medicines and Therapies Devices for Small Populations

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NORD and EveryLife Foundation Outline 2 Technical Corrections to the IRA’s Orphan Drug Exclusion to Improve the Lives of Those Living with Rare Diseases

Published: Jan 1, 1970
Tagged in: Access to Affordable Medicines Access to Affordable, Adequate Coverage

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NORD Submits Comments on Docket No. NOT-AR-22-023; Request for Information on Themes for the NIAMS Strategic Plan for Fiscal Years 2025-2029

Published: Jan 1, 1970
Tagged in: Access to Affordable Medicines Access to Affordable, Adequate Coverage Access to Diagnostics Access to Innovative Medicines and Therapies Advancing Rare Disease Research and Regulatory Science Public Health Research

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NORD Submits Letter of Support on A1825 (Conaway) An Act Establishing Certain Guidelines Concerning Step Therapy Protocols

Published: Jan 1, 1970
Tagged in: Access to Affordable Medicines Access to Affordable, Adequate Coverage

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NORD letter of thanks to Rep. Rob Nosse, sponsor of Oregon House Bill 2047, a bill to create a Rare Disease Advisory Council

Published: Jan 1, 1970
Tagged in: Rare Disease Advisory Councils (RDACs)

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