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 Releases Bill Analysis: Tennessee PBM-Owned Pharmacy Ban (ENACTED 2026 -HB1959/SB2040)
Published: May 29, 2026
Tagged in: Pharmacy Benefit Managers (PBMs)
NORD Joins Patient Advocacy Coalition Sign-On: Montana Medicaid Work Requirements (Proposed Rule 2026-514.1)
Published: May 22, 2026
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Engagement Requirements
Medicare, Medicaid, and Private Health Insurance Coverage
NORD Submits State Regulatory Comments to Utah DHHS: Medicaid Work Requirements
Published: May 21, 2026
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Engagement Requirements
Medicaid Section 1115 Waivers
Medicare, Medicaid, and Private Health Insurance Coverage
NORD Joins Multi-Organization Sign On: Minnesota Copay Accumulator (SF4848/HF4618)
Published: May 15, 2026
Tagged in: Access to Affordable Medicines
Copay Accumulators
Out of Pocket Prescription Drug Costs
NORD Releases Policy Analysis: Utah Medicaid Engagement Requirements (§1115 Renewal)
Published: May 12, 2026
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Engagement Requirements
Medicaid Section 1115 Waivers
Medicare, Medicaid, and Private Health Insurance Coverage
NORD Met With White House OMB on Medicaid Work Requirements
Published: May 8, 2026
Tagged in: Medicaid Engagement Requirements
Medicare, Medicaid, and Private Health Insurance Coverage
NORD Delivers Oral Public Comment to Utah DHHS: §1115 Medicaid Demonstration Renewal
Published: May 7, 2026
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
Access to Diagnostics
Access to Innovative Medicines and Therapies
Affordable Care Act
Medicaid Engagement Requirements
Medicaid Section 1115 Waivers
Medicare, Medicaid, and Private Health Insurance Coverage
NORD Sends Letter to Governor Scott: Vermont Rare Disease Advisory Council Signature (H.46)
Published: May 7, 2026
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD Submits Legislative Proposal: Comprehensive Insurance Coverage for Medical Nutrition in Massachusetts
Published: Apr 24, 2026
Tagged in: Access to Affordable, Adequate Coverage
Medical Nutrition
NORD Joins Letter Urging Congress to Exclude Further Cuts to Medicaid or ACA in Reconciliation
Published: Apr 22, 2026
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
NORD Leads Multi-Organization Sign-On: Rhode Island Step Therapy Reform (S2468/H7539)
Published: Apr 15, 2026
Tagged in: Utilization Management
NORD Delivers Testimony to Vermont Senate Health and Welfare Committee for Mark Up: RDAC Legislation (H46)
Published: Apr 8, 2026
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD Joins Multi-Organization Sign On: Maine Biomarker Coverage (LD 107)
Published: Apr 7, 2026
Tagged in: Access to Affordable, Adequate Coverage
Access to Innovative Medicines and Therapies
Medicare, Medicaid, and Private Health Insurance Coverage
NORD Releases Bill Analysis: Missouri Medicaid Engagement Requirements (HJR 154)
Published: Apr 1, 2026
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
Access to Diagnostics
Access to Innovative Medicines and Therapies
Medicaid Engagement Requirements
Section 1332 Waivers
NORD’s Rare Cancer Coalition Sends Letter on Biomarker Testing Rollback: New York State Budget
Published: Mar 20, 2026
Tagged in: Access to Affordable, Adequate Coverage
Access to Innovative Medicines and Therapies
Medicare, Medicaid, and Private Health Insurance Coverage
NORD Sends Letter on Biomarker Testing Rollback: New York State Budget
Published: Mar 20, 2026
Tagged in: Access to Innovative Medicines and Therapies
Medicare, Medicaid, and Private Health Insurance Coverage
NORD Issues Memo of Support: Vermont Rare Disease Advisory Council Legislation (H46)
Published: Mar 16, 2026
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD Leads Patient Advocacy Coalition Sign-On: Vermont RDAC Legislation (H46)
Published: Mar 16, 2026
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD Sends Updated Policy Letter to Vermont House Chair: Short-Term Limited Duration Insurance (H585)
Published: Mar 11, 2026
Tagged in: Short-Term, Limited-Duration Health Plans and Association Health Plans
NORD Releases Bill Analysis: Tennessee PBM-Owned Pharmacy Ban (HB1959/SB2040)
Published: Mar 10, 2026
Tagged in: Access to Affordable Medicines
Out of Pocket Prescription Drug Costs
NORD Releases Bill Analysis: Mississippi Biomarker Testing Legislation (HB565)
Published: Mar 5, 2026
Tagged in: Access to Affordable, Adequate Coverage
NORD Issues Memo of Support: Rhode Island Step Therapy Reform (S2468/H7539)
Published: Feb 27, 2026
Tagged in: Access to Affordable, Adequate Coverage
Access to Diagnostics
Access to Innovative Medicines and Therapies
Utilization Management
NORD Submits State Regulatory Comments to Nebraska DHHS: Medicaid Work Requirements
Published: Feb 25, 2026
Tagged in: Medicaid Engagement Requirements
Medicare, Medicaid, and Private Health Insurance Coverage
NORD Submits Legislative Proposal: West Virginia RDAC Repeal (SB894/HB5364)
Published: Feb 23, 2026
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD Leads Patient Advocacy Coalition Sign-On: West Virginia RDAC Repeal (SB894/HB5364)
Published: Feb 20, 2026
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD Leads State RDAC Coalition Sign-On to Governor Morrisey: West Virginia RDAC Repeal (SB894/HB5364)
Published: Feb 20, 2026
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD Releases Bill Analysis: Tennessee mRNA Bioweapons Prohibition Act (SB1949)
Published: Feb 19, 2026
Tagged in: Access to Innovative Medicines and Therapies
Advancing Rare Disease Research and Regulatory Science
NORD Delivers Testimony to Vermont Senate Health and Welfare Committee: RDAC Legislation (H46)
Published: Feb 19, 2026
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD Releases Bill Analysis: Maryland Medicaid Engagement Requirements (HB1331)
Published: Feb 19, 2026
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
NORD Sends Letter to Vermont House Health: Short-Term Limited Duration Insurance (H585)
Published: Feb 18, 2026
Tagged in: Access to Affordable, Adequate Coverage
Short-Term, Limited-Duration Health Plans and Association Health Plans
NORD CEO Sends Letter to Governor Morrisey: West Virginia RDAC Repeal (SB894/HB5364)
Published: Feb 13, 2026
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD Leads Multi-Organization Sign-On: Virginia Out-of-Pocket Cost Caps (HB625/SB161)
Published: Feb 3, 2026
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
Out of Pocket Prescription Drug Costs
NORD Releases Bill Analysis: Florida Medicaid Engagement Requirements (SB1758)
Published: Jan 30, 2026
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
NORD Releases Bill Analysis: Virginia Out-of-Pocket Cost Caps (SB161/HB625)
Published: Jan 20, 2026
Tagged in: Access to Affordable, Adequate Coverage
Out of Pocket Prescription Drug Costs
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)
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)
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
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
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)
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
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
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
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
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
NORD Comments on Reauthorization of PDUFA VIII
Published: Aug 14, 2025
Tagged in: Advancing Rare Disease Research and Regulatory Science
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
NORD Joins Six Organizations in Statement on Federal Newborn Screening Legislation
Published: Jul 8, 2025
Tagged in: Access to Diagnostics
Newborn Screening
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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