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
Coalition letter to Congress urging action to stop surprise medical billing
Published: Oct 2, 2019
Tagged in: Access to Affordable, Adequate Coverage
Surprise Medical Billing
NORD sign-on letter from over 40 rare disease patient organizations asking Congress to protect immigrants with rare diseases after having participated in clinical trials
Published: Sep 24, 2019
Tagged in: Advancing Rare Disease Research and Regulatory Science
Immigration
NORD letter to Idaho in opposition to its Section 1115 waiver
Published: Sep 20, 2019
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD letter to Massachusetts regarding copay assistance
Published: Sep 20, 2019
Tagged in: Access to Affordable, Adequate Coverage
Copay Assistance
NORD letter urging United States Citizenship and Immigration Services (USCIS) to reverse a recent decision on deferred action that is having a negative impact on immigrants with rare diseases
Published: Sep 17, 2019
Tagged in: Advancing Rare Disease Research and Regulatory Science
Immigration
Coalition comments to CMS in opposition to its proposal to revoke a rule that helps ensure access in Medicaid
Published: Sep 13, 2019
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
Coalition statement expressing concern about the Administration’s recent action on medical deferred action
Published: Sep 11, 2019
Tagged in: Advancing Rare Disease Research and Regulatory Science
Immigration
NORD statement to the House Committee on Oversight and Reform regarding the recent United States Citizenship and Immigration Services’ (USCIS) recent actions on deferred action affecting immigrants with rare diseases
Published: Sep 10, 2019
Tagged in: Advancing Rare Disease Research and Regulatory Science
Immigration
Coalition comments to CMS in opposition to Indiana’s Section 1115 waiver
Published: Sep 6, 2019
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
Coalition principles regarding the uptake of biosimilars
Published: Sep 1, 2019
Tagged in: Access to Affordable Medicines
Biosimilars
NORD comments to Montana to extend and amend its Health and Economic Livelihood (HELP) Demonstration Program
Published: Aug 20, 2019
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
Coalition comments to CMS in support of Delaware’s Section 1332 wavier
Published: Aug 16, 2019
Tagged in: Access to Affordable, Adequate Coverage
Section 1332 Waivers
NORD letter to Pennsylvania in support of Senate Bill 731, an act pertaining to copay assistance
Published: Aug 15, 2019
Tagged in: Access to Affordable, Adequate Coverage
Copay Assistance
Coalition comments to CMS in support of Rhode Island’s Section 1332 waiver
Published: Aug 14, 2019
Tagged in: Access to Affordable, Adequate Coverage
Section 1332 Waivers
Coalition letter to HHS in opposition to changes to Section 1557 of the ACA
Published: Aug 13, 2019
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Coalition comments to CMS in support of New Mexico’s Section 1115 waiver
Published: Aug 7, 2019
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD comments to FDA regarding clinical trial eligibility
Published: Aug 6, 2019
Tagged in: Access to Innovative Medicines and Therapies
Rare Disease Clinical Trials
Coalition comments to CMS in opposition to Iowa’s Section 1115 waiver
Published: Aug 2, 2019
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
Coalition letter to the Senate in support of S.J.Res.52, legislation to reverse CMS’ most recent Section 1332 guidance
Published: Jul 31, 2019
Tagged in: Access to Affordable, Adequate Coverage
Section 1332 Waivers
Coalition comments to CMS in support of Montana’s Section 1332 waiver
Published: Jul 30, 2019
Tagged in: Access to Affordable, Adequate Coverage
Section 1332 Waivers
MAPRx letter to the Senate Committee on Finance regarding its drug pricing legislative package
Published: Jul 25, 2019
Tagged in: Access to Affordable Medicines
Federal Drug Pricing Legislation in the 116th Congress
NORD letter to New York Governor Cuomo in support of A 5762/S 4497, legislation to create a rare disease advisory council
Published: Jul 25, 2019
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD letter to the Senate Committee on Finance regarding its drug pricing legislative package
Published: Jul 24, 2019
Tagged in: Access to Affordable Medicines
Federal Drug Pricing Legislation in the 116th Congress
Coalition comments and statement regarding CMS guidance on block grant funding for Medicaid
Published: Jul 18, 2019
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
Coalition statement expressing appreciation over the introduction of the Newborn Screening Saves Lives Reauthorization Act in the Senate
Published: Jul 18, 2019
Tagged in: Access to Diagnostics
Newborn Screening
NORD letter to Council of State Government regarding legislation to preserve copay assistance
Published: Jul 17, 2019
Tagged in: Access to Affordable, Adequate Coverage
Copay Assistance
Coalition letter to Congress in support of a provision to increase the uptake of biosimilars
Published: Jul 3, 2019
Tagged in: Access to Affordable Medicines
Biosimilars
Coalition comments to CMS in support of North Dakota’s Section 1332 waiver to create a reinsurance program
Published: Jul 3, 2019
Tagged in: Access to Affordable, Adequate Coverage
Section 1332 Waivers
Coalition comments to CMS in support of Colorado’s Section 1332 waiver to create a reinsurance program
Published: Jul 3, 2019
Tagged in: Access to Affordable, Adequate Coverage
Section 1332 Waivers
Coalition comments to CMS regarding Section 1332 waivers
Published: Jul 2, 2019
Tagged in: Access to Affordable, Adequate Coverage
Section 1332 Waivers
NORD comments to FDA regarding patient preferences in device development
Published: Jul 1, 2019
Tagged in: Access to Innovative Medicines and Therapies
Patient Focused Drug Development
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