Policy Statements & Letters to Policymakers

NORD Issues Memo of Support: New York Rare Disease Advisory Council Legislation (S1287-B/A1296-B)

Published: Jan 7, 2026
Tagged in: Rare Disease Advisory Councils (RDACs)

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NORD Leads Patient Advocacy Coalition Sign-On: New York Rare Disease Advisory Council Legislation (S1287-B/A1296-B)

Published: Jan 7, 2026
Tagged in: Rare Disease Advisory Councils (RDACs)

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NORD Sends Letter to Congressional Leadership Urging Immediate Extension of Premium Tax Credits

Published: Dec 11, 2025
Tagged in: Access to Affordable, Adequate Coverage Affordable Care Act

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NORD Joins Leading Patient Groups in Urging Administration to Protect Patients from Junk Insurance

Published: Oct 2, 2025
Tagged in: Access to Affordable, Adequate Coverage Affordable Care Act Medicare, Medicaid, and Private Health Insurance Coverage

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NORD Letter to Northeast Public Health Collaborative on State RDAC Resources

Published: Sep 23, 2025
Tagged in: Access to Diagnostics COVID-19 Emergency Medical Services Newborn Screening Public Health Rare Disease Advisory Councils (RDACs)

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NORD Submits Oral Testimony for FDA Interested Parties Meeting on Implementation of BPCA and PREA

Published: Sep 16, 2025
Tagged in: Access to Innovative Medicines and Therapies Access to Pediatric Therapies Clinical Trials Protecting FDA Standards for Safe and Effective Drugs

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NORD Comments on the Consideration of Adding Metachromatic Leukodystrophy (MLD) to the Recommended Uniform Screening Panel

Published: Sep 15, 2025
Tagged in: Access to Diagnostics Newborn Screening

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NORD Comments on the Consideration of Adding Duchenne Muscular Dystrophy (DMD) to the Recommended Uniform Screening Panel

Published: Sep 15, 2025
Tagged in: Access to Diagnostics Newborn Screening

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NORD and 189 other patient organizations send letter to Congress urging reauthorization of the Rare Pediatric Disease Priority Review Voucher Program

Published: Sep 11, 2025
Tagged in: Access to Innovative Medicines and Therapies Access to Pediatric Therapies Rare Disease Clinical Trials

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NORD Comments on FDA Rare Disease Innovation, Science, and Exploration Public Workshop Series

Published: Aug 27, 2025
Tagged in: Access to Innovative Medicines and Therapies Advancing Rare Disease Research and Regulatory Science

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NORD Comments on Reauthorization of PDUFA VIII

Published: Aug 14, 2025
Tagged in: Advancing Rare Disease Research and Regulatory Science

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NORD Joins Statement Urging Congress to Reauthorize Enhanced Advance Premium Tax Credits (eAPTCs)

Published: Jul 30, 2025
Tagged in: Access to Affordable, Adequate Coverage Affordable Care Act Medicare, Medicaid, and Private Health Insurance Coverage

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NORD Joins Six Organizations in Statement on Federal Newborn Screening Legislation

Published: Jul 8, 2025
Tagged in: Access to Diagnostics Newborn Screening

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NORD Joins Letter Warning Congress Against Dangerous Cuts to Health Care for Patients

Published: Jul 1, 2025
Tagged in: Access to Affordable, Adequate Coverage Medicare, Medicaid, and Private Health Insurance Coverage

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NORD Joins Statement Opposing Senate Passage of HR1

Published: Jun 28, 2025
Tagged in: Access to Affordable, Adequate Coverage Medicare, Medicaid, and Private Health Insurance Coverage

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NORD Rare Disease Centers of Excellence Directors Urge Congressional Leadership to Reject Medicaid Cuts in HR1

Published: Jun 27, 2025
Tagged in: Access to Affordable, Adequate Coverage Access to Innovative Medicines and Therapies Medicare, Medicaid, and Private Health Insurance Coverage

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NORD Urges Ohio Governor Mike DeWine to Line-Item Veto Rare Disease Advisory Council (RDAC) Repeal in the Final Budget

Published: Jun 26, 2025
Tagged in: Rare Disease Advisory Councils (RDACs)

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NORD Submits Comments to CMS on MDPNP IPAY 2028

Published: Jun 26, 2025
Tagged in: Access to Affordable Medicines Medicare, Medicaid, and Private Health Insurance Coverage

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NORD Submits Comments to FDA on “Clinical Data Interchange Standards Consortium Dataset-JavaScript Object Notation”

Published: Jun 9, 2025
Tagged in: Advancing Rare Disease Research and Regulatory Science Research

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NORD Signs-On to Letter Asking Congress to Support the NIH

Published: Jun 5, 2025
Tagged in: Ensuring Adequate Funding for NIH

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NORD Submits Testimony in Opposition to the Proposed Elimination of the Ohio Rare Disease Advisory Council in State Senate Budget Proposal

Published: Jun 4, 2025
Tagged in: Rare Disease Advisory Councils (RDACs)

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NORD Asks Governor Stitt to Sign Senate Bill 207 (OK) Into Law Creating the Oklahoma Rare Disease Advisory Council

Published: May 30, 2025
Tagged in: Rare Disease Advisory Councils (RDACs)

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NORD Joins Statement Urging CMS to Deny Georgia’s Pathways to Coverage Waiver Extension Request

Published: May 30, 2025
Tagged in: Access to Affordable, Adequate Coverage Medicare, Medicaid, and Private Health Insurance Coverage

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NORD Submits Testimony to House Appropriations Subcommittee on Agriculture, Rural Development, Food and Drug Administration, and Related Agencies

Published: May 23, 2025
Tagged in: Advancing Rare Disease Research and Regulatory Science Appropriations Public Health

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NORD Joins Statement Urging Congress Not to Pass Devastating Health Care Cuts

Published: May 20, 2025

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NORD Urges Governor Dunleavy to Sign SB 133 (AK) Step Therapy Reform Bill

Published: May 19, 2025
Tagged in: Access to Affordable Medicines Access to Innovative Medicines and Therapies Utilization Management

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NORD Submits Statement for the Record in Opposition to Cuts to Medicaid

Published: May 13, 2025
Tagged in: Access to Affordable, Adequate Coverage Medicare, Medicaid, and Private Health Insurance Coverage

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NORD Joins Statement for the Record in Advance of Ways and Means Markup

Published: May 13, 2025
Tagged in: Access to Affordable, Adequate Coverage Medicare, Medicaid, and Private Health Insurance Coverage

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NORD Joins Leading Patient Organizations in Letter to HHS Secretary Urging CMS to Reject Arkansas ARHOME 1115 Demonstration Amendment

Published: May 9, 2025
Tagged in: Access to Affordable Medicines Access to Affordable, Adequate Coverage Medicaid Section 1115 Waivers Medicare, Medicaid, and Private Health Insurance Coverage

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NORD Joins Leading Patient Groups in Opposition to Arizona AHCCCS Waiver

Published: May 9, 2025
Tagged in: Access to Affordable, Adequate Coverage Medicaid Section 1115 Waivers Medicare, Medicaid, and Private Health Insurance Coverage

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NORD Joins 271 Organizations in Community Letter to HHS on the Termination of the Advisory Committee on Heritable Disorders in Newborns and Children and Proposed Elimination of other Federal Newborn Screening Infrastructure

Published: May 5, 2025
Tagged in: Access to Diagnostics Newborn Screening

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NORD Sends Letter to Bipartisan Senate Hearing Titled, “Biomedical Research: Keeping America’s Edge in Innovation”

Published: Apr 29, 2025
Tagged in: Advancing Rare Disease Research and Regulatory Science Appropriations Ensuring Adequate Funding for NIH Research

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NORD Signs-on to ARPA-H Appropriations Letter

Published: Apr 23, 2025
Tagged in: Appropriations Ensuring Adequate Funding for NIH

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NORD Submits Witness Testimony to Labor HHS Subcommittee for the NIH

Published: Apr 9, 2025
Tagged in: Ensuring Adequate Funding for NIH

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NORD Signs-on to Ad-Hoc Letter to Support NIH Funding for Fiscal Year 2026

Published: Apr 8, 2025
Tagged in: Ensuring Adequate Funding for NIH

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NORD Rare Disease Centers of Excellence Letter to HHS on Termination of ACHDNC

Published: Apr 6, 2025
Tagged in: Access to Diagnostics Newborn Screening

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NORD CEO Statement on the Termination of the Advisory Committee on Heritable Disorders in Newborns and Children

Published: Apr 4, 2025
Tagged in: Access to Diagnostics Newborn Screening Public Health

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Twenty-Four Patient Advocacy Organizations Join NORD In Support of Montana HB943 Creating a Rare Disease Advisory Council

Published: Apr 3, 2025
Tagged in: Rare Disease Advisory Councils (RDACs)

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NORD Supports Montana HB943 (Tuss) to Establish a Montana Rare Disease Advisory Council

Published: Apr 3, 2025
Tagged in: Rare Disease Advisory Councils (RDACs)

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NORD Issues Statement Regarding the Department of Health and Human Services Reduction in Force

Published: Apr 1, 2025
Tagged in: Advancing Rare Disease Research and Regulatory Science Ensuring Adequate Funding for NIH Medicare, Medicaid, and Private Health Insurance Coverage Newborn Screening Protecting FDA Standards for Safe and Effective Drugs Public Health

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NORD’S CEO Pam Gavin Joins Statement In Support of Pediatric Palliative Care Homes

Published: Mar 27, 2025
Tagged in: Palliative Care

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NORD Joins 215 Organizations in Community Letter of Support of the Accelerating Kids’ Access to Care Act

Published: Mar 26, 2025
Tagged in: Access to Affordable Medicines Access to Affordable, Adequate Coverage Medicare, Medicaid, and Private Health Insurance Coverage Out-of-State Care for Children on Medicaid

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NORD Joins Other Patient Organizations in Support of Prior Authorization Legislation in Montana

Published: Mar 26, 2025
Tagged in: Utilization Management

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NORD and 62 Patient Advocacy Organizations Support A1296-A (Paulin)/S1287-A (Persaud) – Establishing a Permanent Rare Disease Advisory Council in New York

Published: Mar 19, 2025
Tagged in: Rare Disease Advisory Councils (RDACs)

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NORD Submits Testimony in Support of Biomarker Legislation in Oregon

Published: Mar 18, 2025
Tagged in: Genetic Testing

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NORD Submits Testimony In Support of S474 (Lawson) – A Bill to Establish a Rare Disease Advisory Council (RDAC) in Rhode Island

Published: Mar 18, 2025
Tagged in: Rare Disease Advisory Councils (RDACs)

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NORD and 30 Patient Advocacy Organizations Support S474 (Lawson)/H5023 (Kennedy) – Establishing a Rare Disease Advisory Council in Rhode Island

Published: Mar 18, 2025
Tagged in: Rare Disease Advisory Councils (RDACs)

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NORD Joins Letter in Support of HELP Copays Act (S. 864)

Published: Mar 13, 2025
Tagged in: Access to Affordable Medicines Copay Assistance

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NORD Urges New Mexico to Join the Interstate Medical Licensure Compact

Published: Mar 13, 2025
Tagged in: Telehealth

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NORD Joins Patient & Provider Organizations in Support of Rhode Island Step Therapy Reform S116

Published: Mar 12, 2025
Tagged in: Access to Affordable Medicines Access to Innovative Medicines and Therapies Utilization Management

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