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 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 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
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
NORD Signs-on to ARPA-H Appropriations Letter
Published: Apr 23, 2025
Tagged in: Appropriations
Ensuring Adequate Funding for NIH
NORD Submits Witness Testimony to Labor HHS Subcommittee for the NIH
Published: Apr 9, 2025
Tagged in: Ensuring Adequate Funding for NIH
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
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)
NORD Supports Montana HB943 (Tuss) to Establish a Montana Rare Disease Advisory Council
Published: Apr 3, 2025
Tagged in: Rare Disease Advisory Councils (RDACs)
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
NORD’S CEO Pam Gavin Joins Statement In Support of Pediatric Palliative Care Homes
Published: Mar 27, 2025
Tagged in: Palliative Care
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
NORD Joins Other Patient Organizations in Support of Prior Authorization Legislation in Montana
Published: Mar 26, 2025
Tagged in: Utilization Management
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)
NORD Submits Testimony in Support of Biomarker Legislation in Oregon
Published: Mar 18, 2025
Tagged in: Genetic Testing
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)
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)
NORD Joins Letter in Support of HELP Copays Act (S. 864)
Published: Mar 13, 2025
Tagged in: Access to Affordable Medicines
Copay Assistance
NORD Urges New Mexico to Join the Interstate Medical Licensure Compact
Published: Mar 13, 2025
Tagged in: Telehealth
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
NORD Submits Comments on “Accelerated Approval and Considerations for Determining Whether a Confirmatory Trial is Underway Guidance for Industry”
Published: Mar 10, 2025
Tagged in: FDA’s Accelerated Approval Pathway
Protecting FDA Standards for Safe and Effective Drugs
NORD Urges Support of Arizona House Bill 2380 to Create the Rare Disease Advisory Council in AZ
Published: Mar 7, 2025
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD Requests Support for Funding for California’s Jacqueline Marie Zbur Rare Disease Advisory Council
Published: Mar 6, 2025
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD Joins Leading Patient Groups in Urging Administration to Reverse Decision to Exclude Public Comment Periods
Published: Mar 6, 2025
Tagged in: Advancing Rare Disease Research and Regulatory Science
NORD Submits Comments on Expedited Program for Serious Conditions — Accelerated Approval of Drugs and Biologics Guidance for Industry
Published: Mar 5, 2025
Tagged in: Advancing Rare Disease Research and Regulatory Science
FDA’s Accelerated Approval Pathway
Protecting FDA Standards for Safe and Effective Drugs
NORD Signs on to Letter to Ensure Robust Appropriations for the NIH and Reaffirm Indirect Cost Reimbursements
Published: Mar 4, 2025
Tagged in: Advancing Rare Disease Research and Regulatory Science
Appropriations
Ensuring Adequate Funding for NIH
Public Health
Research
NORD Sends Letter of Support for HF 1501 to Fund Minnesota’s RDAC for FY2026 and FY2027
Published: Mar 4, 2025
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD Signs Letter in Support of Federally Funded Research
Published: Feb 26, 2025
Tagged in: Advancing Rare Disease Research and Regulatory Science
Ensuring Adequate Funding for NIH
Funding for Ongoing Science
Public Health
NORD Joins Leading Patient Groups in Urging House Energy & Commerce Health Subcommittee to Pass Meaningful PBM Reform
Published: Feb 25, 2025
Tagged in: Access to Affordable Medicines
NORD Joins Leading Patient Groups in Opposition to Resolution Threatening Medicaid for Millions
Published: Feb 24, 2025
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
NORD Supports HB1697 to Require the Board of Health to Consider Adding Recommended Uniform Screening Panel (RUSP) Conditions to Washington’s Newborn Screening Panel
Published: Feb 20, 2025
Tagged in: Access to Diagnostics
Newborn Screening
NORD Send Letter to Excellus BCBS Expressing Concern on Accelerated Approval Policy
Published: Feb 18, 2025
Tagged in: Access to Affordable, Adequate Coverage
Access to Innovative Medicines and Therapies
FDA’s Accelerated Approval Pathway
NORD Sends Letter to Independence BCBS Expressing Concern on Accelerated Approval Policy
Published: Feb 18, 2025
Tagged in: Access to Affordable, Adequate Coverage
Access to Innovative Medicines and Therapies
FDA’s Accelerated Approval Pathway
Protecting FDA Standards for Safe and Effective Drugs
NORD Joins 32 Patient Organizations in Support of HB2380 to Create an RDAC in Arizona
Published: Feb 18, 2025
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD CEO Statement: Navigating Proposed Policy Changes and Their Impact on Rare Disease Advocacy
Published: Feb 14, 2025
Tagged in: Advancing Rare Disease Research and Regulatory Science
Public Health
Research
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 14, 2025
Tagged in: Access to Diagnostics
Newborn Screening
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)