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 comments to Utah in opposition to its Section 1115 waiver
Published: Jun 30, 2019
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD comments to Idaho in opposition of its Section 1332 waiver
Published: Jun 30, 2019
Tagged in: Access to Affordable, Adequate Coverage
Section 1332 Waivers
NORD comments to Delaware in support of its Section 1332 waiver
Published: Jun 29, 2019
Tagged in: Access to Affordable, Adequate Coverage
Section 1332 Waivers
Coalition letter to state insurance commissioners regarding copay accumulator adjustment programs
Published: Jun 26, 2019
Tagged in: Access to Affordable, Adequate Coverage
Copay Assistance
NORD letter to the Senate Committee on Health, Education, Labor and Pensions (HELP) on the Lower Health Care Costs Act of 2019 (S. 1895)
Published: Jun 25, 2019
Tagged in: Access to Affordable Medicines
Federal Drug Pricing Legislation in the 116th Congress
Coalition letter to Congress in support of the Newborn Screening Saves Lives Reauthorization Act (H.R.2507)
Published: Jun 24, 2019
Tagged in: Access to Diagnostics
Newborn Screening
NORD letter to the House Committee on Energy and Commerce in support of the Newborn Screening Saves Lives Reauthorization Act of 2019 (H.R. 2507)
Published: Jun 24, 2019
Tagged in: Access to Diagnostics
Newborn Screening
NORD comments to CMS regarding the new technology add-on payment program
Published: Jun 24, 2019
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
Coalition comments regarding the Office of Management and Budget’s (OMB) actions to potentially change the index for the calculation of inflation for the federal poverty line
Published: Jun 21, 2019
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
NORD comments to Montana in support of its Section 1332 waiver to create a reinsurance program
Published: Jun 14, 2019
Tagged in: Access to Affordable, Adequate Coverage
Section 1332 Waivers
NORD comments to Indiana in opposition to its Section 1115 waiver implementing work requirements in Medicaid
Published: Jun 11, 2019
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD comments to the Institute for Clinical and Economic Review’s (ICER) value assessment framework for 2020
Published: Jun 10, 2019
Tagged in: Access to Affordable Medicines
Value-based Pricing Assessments
Coalition letter to Congress in support of the Vaccine Awareness Campaign to Champion Immunization Nationally and Enhance Safety (VACCINES) Act of 2019 (H.R.2862)
Published: Jun 7, 2019
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
MAPRx coalition comments regarding draft legislation to cap out-of-pocket costs in Medicare Part D
Published: Jun 6, 2019
Tagged in: Access to Affordable, Adequate Coverage
Out of Pocket Prescription Drug Costs
Coalition letter to Congress in support of the Medical Expense Savings Act (S.110, H.R.2073)
Published: Jun 6, 2019
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
NORD comments on the Senate Health, Education, Labor, and Pensions (HELP) Committee’s draft legislation, the Lower Health Care Costs Act of 2019
Published: Jun 5, 2019
Tagged in: Access to Affordable Medicines
Federal Drug Pricing Legislation in the 116th Congress
Coalition letter to Congress in opposition to draft legislation that would amend Section 101 of the Patent Act
Published: Jun 3, 2019
Tagged in: Access to Affordable Medicines
Federal Drug Pricing Legislation in the 116th Congress
NORD letter to Texas Governor Greg Abbott in support of SB 747 and SB 748, legislation pertaining to newborn screening
Published: Jun 3, 2019
Tagged in: Access to Diagnostics
Newborn Screening
NORD comments to FDA regarding natural history data registries
Published: May 24, 2019
Tagged in: Access to Innovative Medicines and Therapies
Patient Focused Drug Development
NORD letter to Congress in support of provisions in the new H.R.987, legislation that aims to lower drug costs and improve the Affordable Care Act (ACA)
Published: May 15, 2019
Tagged in: Access to Affordable Medicines
Federal Drug Pricing Legislation in the 116th Congress
Coalition letter to Congress in support of H.R.1010, legislation to prevent the implementation of the 2018 short-term, limited-duration health plan guidance
Published: May 15, 2019
Tagged in: Access to Affordable, Adequate Coverage
Short-Term, Limited-Duration Health Plans and Association Health Plans
Coalition letter to Congress in support of the original H.R.987, legislation to enhance outreach and enrollment activities
Published: May 15, 2019
Tagged in: Access to Affordable Medicines
Federal Drug Pricing Legislation in the 116th Congress
Coalition letter to Congress in support of H.R.1386, legislation to improve the navigator program
Published: May 15, 2019
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Coalition letter asking Congress to reauthorize the Patient-Centered Outcomes Research Institute
Published: May 13, 2019
Tagged in: Advancing Rare Disease Research and Regulatory Science
PCORI
NORD letter to Illinois in support of HB 2174, legislation to alleviate patient out-of-pocket drug costs
Published: May 13, 2019
Tagged in: Access to Affordable, Adequate Coverage
Out of Pocket Prescription Drug Costs
Coalition letter in support of H.R.986, legislation to reverse harmful Section 1332 guidance
Published: May 8, 2019
Tagged in: Access to Affordable, Adequate Coverage
Section 1332 Waivers
Coalition letter to Congress introducing ourselves and our mission
Published: May 8, 2019
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Coalition response to a request for information (RFI) on allowing the sale of insurance across state lines
Published: May 6, 2019
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
Coalition letter to Tennessee Governor Bill Lee in opposition implementing a block grant to fund Medicaid
Published: Apr 29, 2019
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
Coalition letter to the Administration regarding the potential of a recent memo to hamper FDA
Published: Apr 26, 2019
Tagged in: Access to Innovative Medicines and Therapies
Protecting FDA Standards for Safe and Effective Drugs
Coalition one-pager regarding step therapy reform legislation legislation in Pennsylvania
Published: Apr 24, 2019
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
Coalition letter to Congress regarding appropriations for the Pediatric Device Consortia (PDC) Grant Program
Published: Apr 18, 2019
Tagged in: Access to Innovative Medicines and Therapies
Access to Pediatric Therapies
Appropriations
Coalition letter to Delaware in support of HB 105, step therapy reform legislation
Published: Apr 15, 2019
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
NORD letter to Wisconsin in support of AB 24/SB 26, step therapy reform legislation
Published: Apr 12, 2019
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
Coalition statement in support of H.R.1010, legislation that would nullify the recently revised rule on short-term, limited-duration health plans (STLDHP)
Published: Apr 8, 2019
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
NORD comments to HHS regarding its Proposed Rule on rebates in Medicare Part D and Medicaid managed care
Published: Apr 8, 2019
Tagged in: Access to Affordable, Adequate Coverage
Out of Pocket Prescription Drug Costs
NORD letter to New York in support of A 5762, legislation to create a rare disease advisory council
Published: Apr 4, 2019
Tagged in: Rare Disease Advisory Councils (RDACs)
Coalition letter to Congress asking for funding for the Emergency Medical Services for Children (EMSC) program
Published: Apr 3, 2019
Tagged in: Access to Affordable, Adequate Coverage
Emergency Medical Services
NORD comments to South Carolina regarding its revised Section 1115 waiver
Published: Apr 2, 2019
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
Coalition letter to Tennessee in opposition to implementing a block grant to fund Medicaid
Published: Apr 2, 2019
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD comments to FDA on common issues in rare disease drug development
Published: Apr 2, 2019
Tagged in: Access to Innovative Medicines and Therapies
Patient Focused Drug Development
NORD letter to the House of Representatives in support of the CREATES Act (H.R.965)
Published: Apr 2, 2019
Tagged in: Access to Affordable Medicines
Generic Drugs
Coalition statement lauding federal court decisions to stop the expansion of association health plans and Arkansas’ and Kentucky’s Medicaid work requirements
Published: Mar 29, 2019
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
Short-Term, Limited-Duration Health Plans and Association Health Plans
Coalition statement expressing disappointment at CMS’ approval of Utah’s Section 1115 waiver
Published: Mar 29, 2019
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
Coalition comments in response to a request for information on grandfathered plans
Published: Mar 27, 2019
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Coalition statement regarding actions taken by the Administration and the House of Representatives pertaining to the Affordable Care Act (ACA)
Published: Mar 26, 2019
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
NORD comments to FDA regarding submitting guidance on Patient Experience Data (PED)
Published: Mar 21, 2019
Tagged in: Access to Innovative Medicines and Therapies
Patient Focused Drug Development
NORD letter to Washington in support of House Bill 1879, legislation pertaining to utilization management reform
Published: Mar 20, 2019
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
NORD letter to Illinois in support of House Bill 2174, legislation seeking to lower out-of-pocket drug costs
Published: Mar 19, 2019
Tagged in: Access to Affordable, Adequate Coverage
Out of Pocket Prescription Drug Costs
NORD letter to West Virginia Governor Jim Justice in support of House Bill 2770
Published: Mar 15, 2019
Tagged in: Access to Affordable, Adequate Coverage
Out of Pocket Prescription Drug Costs
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