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.
NORD Issues Position Statement: State Implementation of Medicaid Community Engagement Requirements (H.R.1)
Published: May 18, 2026
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Engagement Requirements
Medicare, Medicaid, and Private Health Insurance Coverage
NORD Comments on FDA’s Proposed Plausible Mechanism Framework Guidance
Published: Apr 27, 2026
Tagged in: Access to Affordable Medicines
Access to Innovative Medicines and Therapies
Access to Pediatric Therapies
Advancing Rare Disease Research and Regulatory Science
Gene Therapies
Genetic Testing
Protecting FDA Standards for Safe and Effective Drugs
Rare Disease Clinical Trials
NORD Rare Disease Centers of Excellence Letter to HHS on Termination of ACHDNC
Published: Apr 6, 2025
Tagged in: Access to Diagnostics
Newborn Screening
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
NORD Joins Statement For The Record Urging House Budget Committees to Protect Access to Quality, Affordable Health Care
Published: Feb 14, 2025
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
NORD Joins Statement For The Record Urging Senate Budget Committee to Protect Access to Quality, Affordable Health Care
Published: Feb 14, 2025
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
NORD Supports HB1782 to Require the Department of Health to Consider Adding Recommended Uniform Screening Panel (RUSP) Conditions to Virginia’s Newborn Screening Panel
Published: Feb 10, 2025
Tagged in: Access to Diagnostics
Newborn Screening
NORD Supports HB553 to Ensure Access to Biomarker Testing in Hawaii
Published: Feb 8, 2025
Tagged in: Genetic Testing
NORD Joins Other Patient Organizations in Oklahoma in Support of Rare Disease Advisory Council (RDAC) Legislation
Published: Feb 8, 2025
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD Joins Leading Patient Groups in Letter to 119th Congress in Support of PBM Reform
Published: Feb 5, 2025
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
Access to Innovative Medicines and Therapies
Out of Pocket Prescription Drug Costs
NORD Joins Letter to HHS Urging Extension of Colorado Comprehensive Care Waiver
Published: Feb 5, 2025
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD Supports A1296-A (Paulin)/S1287-A (Persaud) – Establishing a Permanent Rare Disease Advisory Council in the State of New York
Published: Feb 3, 2025
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD Supports with Amendments RI H.5023 (Kennedy) – Establishing a Rhode Island Rare Disease Advisory Council
Published: Feb 3, 2025
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD and Other Patient Organizations Support HB2380 to Create a Rare Disease Advisory Council in Arizona
Published: Jan 31, 2025
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD joins 21 other patient groups in statement in support of no-cost preventive care
Published: Jan 30, 2025
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
NORD Issues Letter of Support for Vermont H.46 (Stone) to Establish the Vermont Rare Disease Advisory Council (RDAC)
Published: Jan 29, 2025
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD Issues Letter Supporting Step Therapy Reform in New Jersey A1825 (Conaway) to Assembly Financial Institutions and Insurance Committee
Published: Jan 27, 2025
Tagged in: Access to Innovative Medicines and Therapies
Utilization Management
NORD Supports A1296 (Paulin)/S1287 (Persaud) – Establishing a Permanent Rare Disease Advisory Council in the State of New York
Published: Jan 27, 2025
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD Submits Letter in Support of Oregon HB2457 to Create a Rare Disease Advisory Council
Published: Jan 24, 2025
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD Joins 19 Patient Organizations in Support of Oregon HB2457 to Create a Rare Disease Advisory Council
Published: Jan 24, 2025
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD Joins Leading Patient Groups in Letter Detailing Priorities for 119th Congress
Published: Jan 24, 2025
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
NORD Joins Other Patient Organizations Opposing Missouri SB79/HB366 Authorizing the Sale of Unregulated Health Products
Published: Jan 23, 2025
Tagged in: Short-Term, Limited-Duration Health Plans and Association Health Plans
NORD Submits Letter in Support of Washington SB5064 to Create a Rare Disease Advisory Council
Published: Jan 17, 2025
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD Submits Letter in Support of Washington HB1238 to Create a Rare Disease Advisory Council
Published: Jan 17, 2025
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD Urges Nevada Lawmakers to Protect the Rare Disease Advisory Council
Published: Jan 16, 2025
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD Submits Comments to CMS in Response to ICR on MDPNP Written Submissions
Published: Dec 23, 2024
Tagged in: Access to Affordable Medicines
Medicare, Medicaid, and Private Health Insurance Coverage
Out of Pocket Prescription Drug Costs
NORD, as a member of the NCATS Alliance, sends letter requesting NCATS be elevated to an Institution at NIH
Published: Dec 20, 2024
Tagged in: Advancing Rare Disease Research and Regulatory Science
Ensuring Adequate Funding for NIH
NORD submits comments to FDA on Integrating Randomized Controlled Trials for Drug and Biological Products Into Routine Clinical Practice
Published: Dec 17, 2024
Tagged in: Advancing Rare Disease Research and Regulatory Science
Clinical Trials
Protecting FDA Standards for Safe and Effective Drugs
Rare Disease Clinical Trials
NORD Joins Patient Organizations in Support of Ohio HB24 to Provide Biomarker Testing Coverage
Published: Dec 17, 2024
Tagged in: Access to Innovative Medicines and Therapies
NORD Joins 54 Patient Organizations in Urging Arizona to Protect Biomarker Testing Access
Published: Dec 13, 2024
Tagged in: Access to Innovative Medicines and Therapies
NORD Supports New Jersey Senate Bill 3098 Establishing Coverage for Biomarker Testing
Published: Dec 12, 2024
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
Access to Diagnostics
Access to Innovative Medicines and Therapies
Genetic Testing
Utilization Management
NORD joins letter urging CMS to implement appropriate guardrails on utilization management in Part D
Published: Dec 12, 2024
Tagged in: Access to Affordable, Adequate Coverage
NORD joins leading patient groups in letter to Congress urging protection for Medicaid during budget reconciliation process
Published: Dec 10, 2024
Tagged in: Medicare, Medicaid, and Private Health Insurance Coverage
NORD joins letter to Congressional leadership outlining coverage priorities
Published: Dec 10, 2024
Tagged in: Access to Affordable, Adequate Coverage
NORD, along with the Everylife Foundation for Rare Diseases, sends letter with 213 patient organizations urging Congressional leadership to include PRV legislation in an end-of-year package
Published: Dec 4, 2024
Tagged in: Advancing Rare Disease Research and Regulatory Science
NORD Leads 230 Patient Organizations and Children’s Hospitals in Sign On Letter in Support of the Accelerating Kids’ Access to Care Act
Published: Dec 3, 2024
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
NORD Joins Over 100 Patient Organizations in Letter Urging Congress to Fully Fund Congressionally Directed Medical Research Programs
Published: Dec 2, 2024
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
Access to Diagnostics
Access to Innovative Medicines and Therapies
25 Groups Representing Patients and Health Care Professionals Urge U.S. Court of Appeals to Preserve Nondiscrimination Protections for LGBTQ+ Patients
Published: Nov 26, 2024
Tagged in: Access to Affordable, Adequate Coverage
25 Groups Representing Patients and Health Care Professionals Urge U.S. Court of Appeals to Preserve Nondiscrimination Protections for LGBTQ+ Patients
Published: Nov 26, 2024
Tagged in: Access to Affordable, Adequate Coverage
NORD signs-on to letter supporting the Clinical Trial Modernization Act (H.R. 8412)
Published: Nov 18, 2024
Tagged in: Advancing Rare Disease Research and Regulatory Science
Clinical Trials
NORD Urges Governor Walz to Approve the Minnesota RDAC FY25 Funding Request
Published: Nov 15, 2024
NORD Signs on to Letter Supporting End of Year Package to Support Rare Diseases
Published: Nov 14, 2024
Tagged in: Access to Affordable, Adequate Coverage
Access to Innovative Medicines and Therapies
Advancing Rare Disease Research and Regulatory Science
NORD Joins Leading Patient Organizations in Letter to HHS on 2026 NBPP
Published: Nov 12, 2024
Tagged in: Access to Affordable, Adequate Coverage
National Organization for Rare Disorders CEO Pamela Gavin’s Statement on 2024 Election
Published: Nov 6, 2024
NORD Submits Comments on its Priorities for the FDA Rare Disease Innovation Hub
Published: Oct 31, 2024
Tagged in: Advancing Rare Disease Research and Regulatory Science
Protecting FDA Standards for Safe and Effective Drugs
NORD Joins Over 200 Patient and Provider Organizations in a Letter of Support to Congressional Leadership for the Safe Step Act
Published: Oct 15, 2024
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
NORD joins statement supporting permanent extension of ACA’s eAPTCs
Published: Oct 15, 2024
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Medicare, Medicaid, and Private Health Insurance Coverage
NORD Issues Letter of Support for New Jersey S3533 Regarding Step Therapy Protocols
Published: Oct 9, 2024
Tagged in: Access to Innovative Medicines and Therapies
Utilization Management
NORD Sends Letter to New York State Department of Health Commissioner Asking for a Permanent NY RDAC in FY26
Published: Oct 2, 2024
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD Joins 35 Patient Organizations in Colorado to Request Support for Biomarker Legislation
Published: Sep 30, 2024
Tagged in: Access to Innovative Medicines and Therapies
NORD joins statement on Nevada’s Section 1332 waiver request
Published: Sep 25, 2024
Tagged in: Access to Affordable, Adequate Coverage
Section 1332 Waivers
Statement from Pam Gavin, CEO of the National Organization for Rare Disorders (NORD), on Unanimous House Passage of the Give Kids a Chance Act
Published: Sep 24, 2024
NORD joins letter to Congress urging meaningful PBM reform
Published: Sep 18, 2024
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
NORD Issues Letter of Support for Give Kids A Chance Act and Telehealth Modernization Act
Published: Sep 17, 2024
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
Access to Innovative Medicines and Therapies
Telehealth
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