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 and 29 patient organizations strongly oppose adding “work requirements” to the Medicaid program
Published: Apr 24, 2023
Tagged in: Access to Affordable, Adequate Coverage
NORD and 32 patient and provider groups urge courts to preserve FDA’s authority and applaud Supreme Court ruling
Published: Apr 24, 2023
Tagged in: Access to Affordable, Adequate Coverage
NORD and 200+ advocacy organizations urge HHS to protect Medicaid continuous coverage
Published: Apr 24, 2023
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
NORD and 38 other patient organizations submit a letter to the TX Senate Health and Human Services Committee urging them to support SB 1408, Rare Disease Advisory Council legislation
Published: Apr 19, 2023
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD submits comments to the TX House Insurance Committee on HB 3188, biomarker legislation
Published: Apr 18, 2023
Tagged in: Access to Diagnostics
Founding member NORD issues fiscal year 2024 budget request with the NCATS Alliance
Published: Apr 18, 2023
Tagged in: Appropriations
Ensuring Adequate Funding for NIH
NORD and leading patient organizations urge Congress to reject adding a ‘work requirement’ policy to the Medicaid program
Published: Apr 17, 2023
Tagged in: Access to Affordable, Adequate Coverage
Public Health
NORD and 100 rare disease patient organizations send letter to CMS regarding Medicare Drug Price Negotiation Program Guidance
Published: Apr 14, 2023
Tagged in: Access to Affordable, Adequate Coverage
NORD comments on Medicare Drug Price Negotiation Program Guidance
Published: Apr 14, 2023
Tagged in: Access to Affordable, Adequate Coverage
NORD and 51 patient groups release a statement thanking the Justice Department’s stay request in Braidwood lawsuit
Published: Apr 13, 2023
Tagged in: Access to Affordable, Adequate Coverage
NORD and other patient and provider groups sign onto a one-pager to express support for HB 4131, legislation that would improve telehealth access in MI
Published: Apr 12, 2023
Tagged in: Telehealth
NORD submits written testimony to the IN Senate Health and Provider Services Committee in support of HB 1201, legislation to create a Rare Disease Advisory Council
Published: Apr 12, 2023
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD and 29 patient and provider groups warn that Mifepristone ruling threatens all FDA-approved drugs
Published: Apr 11, 2023
Tagged in: Access to Affordable Medicines
Access to Innovative Medicines and Therapies
NORD submits comments to the NV Assembly Committee on Health and Human Services on A.B. 155, biomarker legislation
Published: Apr 5, 2023
Tagged in: Access to Diagnostics
NORD and 15 organizations send letter to Senate Committee on Commerce and Labor urging the passage of SB 194
Published: Apr 4, 2023
Tagged in: Access to Affordable, Adequate Coverage
Access to Innovative Medicines and Therapies
NORD and other organizations urge the FDA to fund the Pediatric Device Consortia Grant Program in FY24
Published: Apr 4, 2023
Tagged in: Access to Innovative Medicines and Therapies
NORD and other patient organizations submitted an amicus curiae brief on the Neese v. Becerra court case
Published: Apr 3, 2023
Tagged in: Access to Affordable, Adequate Coverage
Access to Diagnostics
Public Health
NORD and patient groups urge U.S. Court of Appeals to prevent discrimination against LGBTQ+ patients
Published: Apr 3, 2023
Tagged in: Access to Affordable, Adequate Coverage
Access to Innovative Medicines and Therapies
Public Health
NORD and coalition partners statement on the court decision in Braidwood v Becerra
Published: Mar 30, 2023
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
NORD submits comments to the Hawaiʻi House Committee on Finance in support of SB 674, a bill to adopt the Interstate Medical Licensure Compact
Published: Mar 29, 2023
Tagged in: Telehealth
NORD and other patient organizations urge CMS to host listening sessions for Inflation Reduction Act implementation
Published: Mar 27, 2023
Tagged in: Access to Affordable Medicines
Out of Pocket Prescription Drug Costs
NORD and 30 other advocacy groups release statement on why healthcare is unaffordable to the House Committee on Ways and Means
Published: Mar 23, 2023
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
NORD and other patient advocacy groups send letter to President Biden and Vice President Harris urging them tp protect Medicare, Medicaid, and Social Security Programs
Published: Mar 23, 2023
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
NORD and other patient advocacy groups send letter to Congressional Leadership urging them to protect Medicare, Medicaid, and Social Security Programs
Published: Mar 23, 2023
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
NORD sends letter to Colorado Prescription Drug Affordability Board regarding Senate Bill 21-175
Published: Mar 23, 2023
Tagged in: Out of Pocket Prescription Drug Costs
NORD and other patient advocacy groups send letter to CMS on Georgia SBE Blueprint Letter
Published: Mar 22, 2023
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
NORD submits comments to the Florida Senate Health Policy Committee & House Healthcare Regulation Subcommittee in support of SB 1218/HB 805, biomarker legislation
Published: Mar 21, 2023
Tagged in: Access to Diagnostics
NORD and other stakeholders send letter to Minnesota lawmakers encouraging them to support the expansion of biomarker testing
Published: Mar 17, 2023
Tagged in: Access to Diagnostics
NORD and other stakeholders release fact sheet on biomarker testing for Minnesota
Published: Mar 17, 2023
Tagged in: Access to Diagnostics
NORD and other patient advocacy groups send letter to Congress asking to oppose the REINS Act
Published: Mar 17, 2023
NORD and other patient advocacy groups urge CMS to protect patients’ access to care as the Medicaid continuous coverage requirements end
Published: Mar 17, 2023
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
NORD and other patient advocacy groups sign letter showing their support of the Medicaid Program
Published: Mar 17, 2023
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
NORD comments on Opportunity for Feedback on Development and Dissemination of Educational Materials on Rare Disease Drug Development
Published: Mar 17, 2023
Tagged in: Advancing Rare Disease Research and Regulatory Science
NORD and 42 other organizations submit a letter of support encouraging CT lawmakers to support biomarker legislation
Published: Mar 15, 2023
Tagged in: Access to Diagnostics
NORD submits comments to the Hawaiʻi House Committee on Health & Homelessness in support of SB 674, a bill to adopt the Interstate Medical Licensure Compact
Published: Mar 15, 2023
Tagged in: Telehealth
NORD signs on to letter sent to Ohio House Insurance Committee supporting biomarker legislation
Published: Mar 14, 2023
Tagged in: Access to Diagnostics
Access to Innovative Medicines and Therapies
NORD and other stakeholders send letter to North Carolina applauding Medicaid expansion
Published: Mar 13, 2023
Tagged in: Medicare, Medicaid, and Private Health Insurance Coverage
NORD urges CMS to reduce patient and provider burdens in prior authorization
Published: Mar 10, 2023
Tagged in: Access to Affordable Medicines
NORD signs on to letter encouraging the expansion of New York’s 1332 Essential Plan
Published: Mar 10, 2023
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Out of Pocket Prescription Drug Costs
NORD and other stakeholders urge Congress to pass the PASTEUR Act in 2023
Published: Mar 8, 2023
Tagged in: Access to Innovative Medicines and Therapies
Advancing Rare Disease Research and Regulatory Science
NORD submits comments to the Missouri House Committee on Professional Registration and Licensing in support of HB 285, a bill to adopt the Interstate Medical Licensure Compact
Published: Feb 21, 2023
Tagged in: Telehealth
NORD sends Congressional leadership its priorities for the 118th Congress
Published: Feb 13, 2023
Tagged in: Access to Affordable, Adequate Coverage
NORD sends feedback to Secretary Becerra on the Delaware 1115 Demonstration Waiver Extension Request
Published: Feb 10, 2023
Tagged in: Medicaid Section 1115 Waivers
NORD submits comments to the Hawaiʻi Senate Committee on Health & Human Services in support of SB 674, a bill to adopt the Interstate Medical Licensure Compact
Published: Feb 10, 2023
Tagged in: Telehealth
NORD and 74 patient advocacy organizations applauds the introduction of the Help Ensure Lower Patient Copays Act (HELP Copays Act)
Published: Feb 9, 2023
Tagged in: Access to Affordable, Adequate Coverage
Copay Assistance
NORD and 11 other patient organizations submit a letter to the IN House Committee on Public Health urging them to support HB 1201, Rare Disease Advisory Council legislation
Published: Feb 8, 2023
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD submits letter to CMS outlining improvements needed for the Medicare Part D Low Income Subsidy program
Published: Feb 7, 2023
Tagged in: Medicare, Medicaid, and Private Health Insurance Coverage
NORD submits comment letter on Rhode Island’s 1115 Demonstration Extension
Published: Feb 3, 2023
Tagged in: Medicaid Section 1115 Waivers
NORD provides feedback on the Oklahoma 1115 Demonstration Extension Request
Published: Feb 3, 2023
Tagged in: Medicaid Section 1115 Waivers
NORD submits feedback on KanCare 1115 Demonstration Extension
Published: Feb 3, 2023
Tagged in: Medicaid Section 1115 Waivers
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