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 Submits Testimony in Support of Biomarker Legislation in Oregon
Published: Mar 18, 2025
Tagged in: Genetic Testing
NORD Joins Letter in Support of HELP Copays Act (S. 864)
Published: Mar 13, 2025
Tagged in: Access to Affordable Medicines
Copay Assistance
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)
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