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 policy@rarediseases.org if you have questions or need additional information. 

NORD Issues Letter of Support for Rhode Island S2611/H7822 Regarding Step Therapy Protocols

Published: Mar 18, 2024
Tagged in: Access to Affordable Medicines Access to Affordable, Adequate Coverage Access to Innovative Medicines and Therapies Utilization Management

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NORD submits comments to CMS in response to the Medicare Prescription Payment Plan (MPPP) Draft Guidance – Part Two

Published: Mar 15, 2024
Tagged in: Access to Affordable Medicines Access to Affordable, Adequate Coverage Medicare, Medicaid, and Private Health Insurance Coverage Out of Pocket Prescription Drug Costs

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NORD joins coalition of leading patient organizations in submitting comments to CMS on the Medicare Prescription Payment Plan (MPPP) Part 2 Draft Guidance

Published: Mar 15, 2024

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NORD Issues Letter of Support for New Jersey A1825 Regarding Step Therapy Protocols

Published: Mar 13, 2024
Tagged in: Access to Affordable Medicines Access to Affordable, Adequate Coverage Access to Innovative Medicines and Therapies Utilization Management

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NORD Sends Letter of Support On Tennessee HB1973 – An Act Relative to Newborn Screening

Published: Mar 12, 2024
Tagged in: Access to Affordable Medicines Access to Affordable, Adequate Coverage

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NORD Sends a Letter of Support for Provisions of Vermont H.766 Relating to Step Therapy Requirements

Published: Mar 12, 2024
Tagged in: Access to Affordable Medicines Access to Affordable, Adequate Coverage Access to Innovative Medicines and Therapies

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NORD Submits Testimony on Biomarker Coverage in Nevada

Published: Mar 11, 2024
Tagged in: Access to Innovative Medicines and Therapies

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NORD Supports SB5821 in Washington to Protect Audio-Only Telehealth Services

Published: Mar 5, 2024
Tagged in: Telehealth

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NORD submits letter in support of CT S.B. No. 206, concerning the expansion of the Katie Beckett Waiver program

Published: Mar 5, 2024
Tagged in: Access to Affordable, Adequate Coverage Medicare, Medicaid, and Private Health Insurance Coverage

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NORD Sends a Letter of Support for S.B. No. 175, An Act Concerning Funds for the CT RDAC

Published: Mar 5, 2024
Tagged in: Rare Disease Advisory Councils (RDACs)

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NORD and other stakeholders submit letter to Congress urging passage of the PASTEUR Act

Published: Feb 29, 2024
Tagged in: Funding for Ongoing Science Public Health Research

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NORD submits statement for the record in advance of crucial Rare Disease Day hearing

Published: Feb 28, 2024
Tagged in: Access to Affordable, Adequate Coverage Access to Innovative Medicines and Therapies Advancing Rare Disease Research and Regulatory Science Out-of-State Care for Children on Medicaid

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NORD Joins Patient Organizations in Raising Concern with Kentucky Bill Proposal to Institute a State Coverage Benefit Mandate Defrayal Process

Published: Feb 27, 2024
Tagged in: Access to Affordable, Adequate Coverage

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NORD joins leading patient groups in urging HHS to finalize crucial rules with significant impacts on patient access

Published: Feb 26, 2024
Tagged in: Access to Affordable, Adequate Coverage

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NORD joins leading patient and provider groups in urging Congress to act on telehealth

Published: Feb 22, 2024
Tagged in: Telehealth

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NORD joins 21 other patient organizations in urging the Department of Labor to rescind 2018 Association Health Plan Final Rule

Published: Feb 21, 2024
Tagged in: Access to Affordable, Adequate Coverage Medicare, Medicaid, and Private Health Insurance Coverage Short-Term, Limited-Duration Health Plans and Association Health Plans

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NORD joins leading patient organizations in providing comments to Florida on expanding eligibility for Children’s Health Insurance Program (CHIP)

Published: Feb 21, 2024
Tagged in: Access to Affordable, Adequate Coverage

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NORD Supports Access to Out-of-State Telehealth Providers for Coloradans with Support of SB24-141

Published: Feb 21, 2024
Tagged in: Telehealth

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NORD’s Statement in Support for Reauthorization of Rare Pediatric Disease Priority Review Voucher Program

Published: Feb 15, 2024
Tagged in: Access to Innovative Medicines and Therapies Advancing Rare Disease Research and Regulatory Science Research

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NORD is Proud to Support Rare Disease Advisory Council Bill HB2758 in Arizona

Published: Feb 7, 2024
Tagged in: Rare Disease Advisory Councils (RDACs)

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NORD submits comments to NIST on 88 FR 86693, the Draft Interagency Guidance Framework for the Exercise of March-In Rights

Published: Feb 6, 2024
Tagged in: Access to Affordable Medicines

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NORD Supports HF2157 to Ensure Coverage of Biomarker Testing in Iowa

Published: Feb 5, 2024
Tagged in: Access to Affordable, Adequate Coverage

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NORD joins leading patient organizations in submitting comments to CMS on Medicaid Unwinding IFR

Published: Feb 2, 2024
Tagged in: Access to Affordable, Adequate Coverage Medicare, Medicaid, and Private Health Insurance Coverage

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NORD joins 24 Patient/Provider Groups in Urging the Supreme Court to Preserve FDA Authority by Reversing Fifth Circuit’s Decision in Alliance for Hippocratic Medicine et al. v FDA et al.

Published: Jan 31, 2024
Tagged in: Access to Affordable, Adequate Coverage

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NORD Opposes Newborn Exemption Bill in Nebraska

Published: Jan 30, 2024
Tagged in: Newborn Screening

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NORD Submits Written Testimony in Support of Biomarker Coverage in Hawaii

Published: Jan 30, 2024
Tagged in: Access to Innovative Medicines and Therapies

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NORD Submits Recommendations Relating to SB274/HB570, An Act Establishing a Prescription Drug Affordability Board (PDAB) in the Commonwealth of Virginia

Published: Jan 29, 2024
Tagged in: Access to Affordable Medicines Access to Affordable, Adequate Coverage

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NORD Submits Testimony in Response to Proposals in the NYS FY25 Executive Budget

Published: Jan 25, 2024
Tagged in: Access to Affordable Medicines Access to Affordable, Adequate Coverage

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NORD is Proud to Support SB 1772 for the Creation of a Rare Disease Advisory Council in Oklahoma

Published: Jan 24, 2024
Tagged in: Rare Disease Advisory Councils (RDACs)

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NORD submits comments in response to Senator Cassidy’s request for information on “Improving Americans’ Access to Gene Therapies”

Published: Jan 22, 2024
Tagged in: Access to Affordable Medicines Medicare, Medicaid, and Private Health Insurance Coverage Out of Pocket Prescription Drug Costs Out-of-State Care for Children on Medicaid Value-based Pricing Assessments

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NORD submits recommendations to CMS on improving the Medicare Drug Price Negotiation Program (MDPNP) Patient Listening Sessions

Published: Jan 22, 2024
Tagged in: Access to Affordable Medicines Medicare, Medicaid, and Private Health Insurance Coverage

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NORD joins 20 organizations in encouraging Congressional leadership to prioritize newborn screening programs in FY 2024 appropriations

Published: Jan 18, 2024
Tagged in: Access to Diagnostics Newborn Screening

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NORD Submits Comments on Federal Registrar, Volume 88, Number 198: ICD-11 Request for Information

Published: Jan 16, 2024
Tagged in: Access to Affordable, Adequate Coverage Access to Diagnostics Access to Innovative Medicines and Therapies Public Health

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NORD is Proud to Support SB 5097 for the Creation of a Rare Disease Advisory Council in Washington

Published: Jan 10, 2024
Tagged in: Rare Disease Advisory Councils (RDACs)

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NORD Submits Written Testimony in Support of Audio-Only Telehealth Services in Washington

Published: Jan 9, 2024
Tagged in: Telehealth

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NORD Joins Patient Advocacy Organizations in Submitting Comments for Notice of Benefit and Payment Parameters for 2025 Proposed Rule; Updating Section 1332 Waiver Public Notice Procedures; Medicaid; Consumer Operated and Oriented Plan (CO-OP) Program; and Basic Health Program (CMS-9895-P)

Published: Jan 9, 2024
Tagged in: Access to Affordable Medicines Access to Affordable, Adequate Coverage

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NORD Joins Public Health Groups in Urging Fifth Circuit Court of Appeals to Prevent Discrimination Against LGBTQ+ Patients

Published: Jan 9, 2024
Tagged in: Access to Affordable Medicines Access to Affordable, Adequate Coverage Public Health

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NORD Sends a Letter of Support for Indiana Senate Bill 43 – Establishes a Rare Disease Advisory Council

Published: Jan 4, 2024
Tagged in: Rare Disease Advisory Councils (RDACs)

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NORD Sends a Letter of Support for Vermont House Bill 573 – Establishes a Rare Disease Advisory Council

Published: Jan 4, 2024
Tagged in: Rare Disease Advisory Councils (RDACs)

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NORD Joins Other Patient Organizations Opposing Missouri SB925/HB2082 Authorizing the Sale of Unregulated Health Products

Published: Jan 3, 2024
Tagged in: Short-Term, Limited-Duration Health Plans and Association Health Plans

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NORD Joins Leading Patient Advocacy Organizations in Submitting Comments on the Federal Independent Dispute Resolution Operations

Published: Jan 2, 2024
Tagged in: Access to Affordable, Adequate Coverage

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NORD joins 15 patient organizations in supporting North Carolina’s Medicaid demonstration extension request

Published: Dec 19, 2023
Tagged in: Access to Affordable, Adequate Coverage Medicare, Medicaid, and Private Health Insurance Coverage

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NORD joins patient groups in applauding proposed rule to strengthen consumer protections in Association Health Plans

Published: Dec 19, 2023
Tagged in: Access to Affordable, Adequate Coverage Short-Term, Limited-Duration Health Plans and Association Health Plans

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NORD comments on Docket No. FDA-2023-D-2318- Demonstrating Substantial Evidence of Effectiveness With One Adequate and Well-Controlled Clinical Investigation and Confirmatory Evidence

Published: Dec 18, 2023
Tagged in: Advancing Rare Disease Research and Regulatory Science

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NORD Joins Leading Patient Advocacy Organizations in Submittting Comments on Processes for Assessing Compliance with Mental Health Parity and Addiction Equity in Medicaid and CHIP

Published: Dec 15, 2023
Tagged in: Access to Affordable Medicines Access to Affordable, Adequate Coverage

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The Orphan Drug Act at 40: Legislative Triumph and the Challenges of Success

Published: Dec 12, 2023
Tagged in: Orphan Drug Act

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NORD joins leading patient organizations in encouraging CMS to approve Maryland’s Section 1115 demonstration amendment

Published: Dec 8, 2023
Tagged in: Access to Affordable, Adequate Coverage Medicaid Section 1115 Waivers

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NORD Joins Leading Patient Organizations In a Letter To The House of Representatives To Request Adding The PASTEUR Act Within Any Moving Legislative Vehicle To Ensure Its Passage This Year

Published: Dec 6, 2023
Tagged in: Public Health

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NORD Submits Comments on FDA Proposed Rule Medical Devices; Laboratory Developed Tests (88 FR 68006)

Published: Dec 1, 2023
Tagged in: Access to Affordable Medicines Access to Affordable, Adequate Coverage Access to Innovative Medicines and Therapies Advancing Rare Disease Research and Regulatory Science

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NORD and EveryLife Foundation Lead 170 Organizations in Urging Congress to Consider the Two Technical Fixes to the IRA’s Orphan Drug Exclusion

Published: Dec 1, 2023
Tagged in: Access to Affordable, Adequate Coverage

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