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 Supports NCATS Alliance in Recommendation that Congress Allocate $51.303B for the NIH and $1.194B for the NCATS for Fiscal Year 2025 Appropriations

Published: Jun 13, 2024

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NORD Joins 24 Patient and Provider Groups in a Statement Regarding the Supreme Court’s Decision in Alliance for Hippocratic Medicine v. FDA

Published: Jun 13, 2024
Tagged in: Access to Innovative Medicines and Therapies Protecting FDA Standards for Safe and Effective Drugs

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NORD Signs on to Letter Offering Recommendations for Patient Priorities for the 2026 Notice of Benefit and Payment Parameters

Published: Jun 7, 2024
Tagged in: Access to Affordable Medicines Access to Affordable, Adequate Coverage Affordable Care Act

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NORD & 16 Patient Organizations Ask Speaker Carl Heastie and Leader Andrea Stewart-Cousins for a Permanent NY RDAC (A10292-A/S9724)

Published: May 31, 2024
Tagged in: Rare Disease Advisory Councils (RDACs)

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NORD joins 122 other organizations in advocating for increased funding for Congressionally Directed Medical Research Programs (CDMRP)

Published: May 30, 2024
Tagged in: Advancing Rare Disease Research and Regulatory Science

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NORD Supports Pennsylvania House Bill 1754 Providing Coverage for Biomarker Testing

Published: May 29, 2024
Tagged in: Access to Diagnostics Access to Innovative Medicines and Therapies Gene Therapies Genetic Testing

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NORD joins leading patient groups in urging Congress to require CMS to provide annual updates on the Medicare Prescription Payment Plan (MP3)

Published: May 24, 2024
Tagged in: Access to Affordable, Adequate Coverage

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NORD Issues Letter of Support for A10292 (Paulin) – Creating a Permanent RDAC in New York State

Published: May 17, 2024
Tagged in: Rare Disease Advisory Councils (RDACs)

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NORD Issues Letter of Support for North Carolina Bill HB681 Joining the Interstate Medical Licensure Compact (IMLC)

Published: May 14, 2024
Tagged in: Telehealth

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NORD joins leading patient groups in urging CMS to approve Colorado’s Demonstration Amendment extending continuous eligibility to children on Medicaid

Published: May 13, 2024
Tagged in: Access to Affordable, Adequate Coverage Medicare, Medicaid, and Private Health Insurance Coverage

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NORD Urges Congress to Reauthorize the Rare Pediatric Disease Priority Review Voucher Program: H.R. 7384, the Creating Hope Reauthorization Act

Published: May 9, 2024
Tagged in: Advancing Rare Disease Research and Regulatory Science

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NORD Joins a Letter of Support on Innovation in Pediatric Drugs Act of 2023 (H.R. 6664)

Published: May 8, 2024
Tagged in: Access to Innovative Medicines and Therapies Advancing Rare Disease Research and Regulatory Science

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NORD joins letter of support urging funding for the Pediatric Device Consortia Grant Program

Published: May 6, 2024
Tagged in: Access to Innovative Medicines and Therapies Advancing Rare Disease Research and Regulatory Science

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NORD joins letter supporting H.R. 5397, a bill to increase access to home infusion for Medicare patients

Published: May 3, 2024
Tagged in: Access to Affordable Medicines Access to Affordable, Adequate Coverage Medicare, Medicaid, and Private Health Insurance Coverage

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NORD Supports H7363 (Kennedy)/S2390 (Lawson) – Establishes a Rare Disease Advisory Council in the State of Rhode Island

Published: Apr 30, 2024
Tagged in: Rare Disease Advisory Councils (RDACs)

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NORD joins leading patient groups in submitting comments to CMS on M3P model documents

Published: Apr 29, 2024
Tagged in: Access to Affordable, Adequate Coverage Medicare, Medicaid, and Private Health Insurance Coverage Out of Pocket Prescription Drug Costs

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NORD Sends Comments Regarding Colorado SB24-203

Published: Apr 26, 2024
Tagged in: Out of Pocket Prescription Drug Costs Rare Disease Advisory Councils (RDACs)

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NORD Joins 32 Patient Organizations in Applauding the Release of Section 1557 of the Affordable Care Act Rule to Protect All Patients from Discrimination When Accessing Health Care

Published: Apr 26, 2024
Tagged in: Access to Affordable, Adequate Coverage Affordable Care Act

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NORD joins leading patient groups in providing comments to CMS on Florida’s 1115 CHIP eligibility extension

Published: Apr 24, 2024
Tagged in: Access to Affordable, Adequate Coverage Medicare, Medicaid, and Private Health Insurance Coverage

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NORD Responds to Proposed Amendments Offered by Health Plans to Step Therapy Provisions of Vermont H.766 (Black)

Published: Apr 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 Colorado State, Veterans, and Military Affairs Committee on SB24-203

Published: Apr 17, 2024

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NORD & Patient Organizations Ask Mississippi Governor Tate Reeves to Sign SB2156 MS RDAC Bill Into Law

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

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NORD and 34 Patient Organizations Celebrate Biden Administration’s Rule to Protect Patients from Short-Term Health Plans

Published: Mar 28, 2024
Tagged in: Access to Affordable Medicines Access to Affordable, Adequate Coverage

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NORD Sends Letter of Support to Vermont Senate Health for H.766 Relating to Step Therapy Reforms

Published: Mar 27, 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 & 22 Patient Organizations Issue Letter of Support & Recommendations for MS RDAC Bills HB616/SB2156

Published: Mar 25, 2024
Tagged in: Rare Disease Advisory Councils (RDACs)

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NORD Submits Statement for the Record on the LDT Hearing

Published: Mar 21, 2024
Tagged in: Access to Innovative Medicines and Therapies Advancing Rare Disease Research and Regulatory Science

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NORD Signs On To Letter Urging Congress to Swiftly Pass Pharmacy Benefit Manager (PBM) Reforms That Ensure Patient Access to More Affordable Healthcare

Published: Mar 19, 2024
Tagged in: Access to Affordable Medicines Access to Affordable, Adequate Coverage

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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 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 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 Signs On to A Letter to The Committee on Education and the Workforce Request for Information on Employer-Sponsored Insurance and Employee Retirement Income Security Act (ERISA)

Published: Mar 15, 2024
Tagged in: Access to Affordable Medicines Access to Affordable, Adequate Coverage

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NORD with the Safe Step Act Ad Hoc Coalition Submit Comments for the Committee’s RFI On The Employee Retirement Income Security Act (ERISA) with Recommendations to Reform Step Therapy and Mark Up Safe Step Act (H.R. 2630)

Published: Mar 15, 2024
Tagged in: Access to Affordable Medicines Access to Affordable, Adequate Coverage Access to Innovative Medicines and Therapies

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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 joins leading patient organizations in submitting comments to CMS on Pennsylvania 1115 waiver

Published: Mar 13, 2024

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NORD Joins Patient Organizations in Support of New Jersey A1825 Establishing Step Therapy Protocols

Published: Mar 13, 2024
Tagged in: Access to Affordable Medicines Access to Affordable, Adequate Coverage Out of Pocket Prescription Drug Costs Utilization Management

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NORD Sends Letter of Support to the Vermont House 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 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 Submits Testimony on Biomarker Coverage in Nevada

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

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NORD Joins California Patient Groups in Support of AB2613 to Create an RDAC in California

Published: Mar 11, 2024
Tagged in: Rare Disease Advisory Councils (RDACs)

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NORD joins 17 patient organizations in urging CMS to approve Minnesota continuous eligibility amendment

Published: Mar 6, 2024

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NORD joins leading patient organizations in submitting comments to CMS on Hawaii 1115 waiver

Published: Mar 6, 2024

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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 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 Supports SB5821 in Washington to Protect Audio-Only Telehealth Services

Published: Mar 5, 2024
Tagged in: Telehealth

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NORD Joins Michigan-Based and National Organizations Representing Patients and Their Providers Support H.B. 5339 Protect Michiganders from Harmful Step Therapy Protocols

Published: Mar 4, 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 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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