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
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
NORD provides feedback on New Mexico’s 1115 Demonstration Extension
Published: Feb 3, 2023
Tagged in: Medicaid Section 1115 Waivers
NORD submits comments on the CONNECT for Health Act and other telehealth legislation
Published: Jan 31, 2023
Tagged in: Telehealth
NORD and 83 other patient and provider advocacy organizations submit comments to CMS regarding the Essential Health Benefits (EHBs)
Published: Jan 31, 2023
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Utilization Management
NORD and 32 patient and provider organizations submit comments to CMS supporting the addition of medically necessary nutrition products to the Essential Health Benefits (EHBs)
Published: Jan 31, 2023
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Medical Nutrition
NORD and other patient advocacy groups send letter to Secretary Becerra concerning Essential Health Benefits
Published: Jan 30, 2023
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
NORD submits comments on the Notice of Benefit and Payment Parameters for 2024 Proposed Rule
Published: Jan 30, 2023
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
NORD and 79 other patient organizations submit comments to CMS on the Notice of Benefit and Payment Parameters for 2024 proposed rule.
Published: Jan 30, 2023
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
NORD and 10 other patient organizations oppose Missouri “junk insurance” legislation
Published: Jan 27, 2023
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
Short-Term, Limited-Duration Health Plans and Association Health Plans
NORD and 14 other patient organizations support Washington rare disease legislative priorities
Published: Jan 3, 2023
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD and other patient organizations send feedback to Secretary Becerra on Wisconsin’s 1115 demonstration extension
Published: Dec 16, 2022
Tagged in: Medicaid Section 1115 Waivers
NORD and other patient organizations send feedback to Secretary Becerra on Oregon’s proposed 1115 amendment
Published: Dec 16, 2022
Tagged in: Medicaid Section 1115 Waivers
NORD submits comments on FDA’s “Patient Perspectives on Gene Therapy Products”
Published: Dec 14, 2022
Tagged in: Access to Innovative Medicines and Therapies
Genetic Testing
NORD and seven patient organizations send letter to Maine Department of Environmental Protection urging an amendment to include medically necessary products in the “Stewardship Program for Packaging Law”
Published: Dec 7, 2022
Tagged in: Medical Nutrition
NORD joins numerous health and research organizations urging Congressional Appropriation leaders to pass an omnibus spending year
Published: Dec 6, 2022
Tagged in: Appropriations
NORD joins letter with 22 patient organizations asking Secretary Becerra to establish a National Directory of Healthcare Providers and Services
Published: Dec 6, 2022
Tagged in: Access to Care
Expanded Access
The Administration's Blueprint
NORD and other patient organizations urge Congressional leadership to include the PASTEUR Act in the end-of-year package
Published: Nov 16, 2022
Tagged in: Advancing Rare Disease Research and Regulatory Science
Funding for Ongoing Science
NORD sends letter with 125 other patient organizations to ask Congressional leadership to reauthorize Title V programs and pass necessary reforms to benefit patients
Published: Nov 14, 2022
Tagged in: Orphan Drug Act
User Fee Act
NORD and the Medical Nutrition Equity Coalition sends letter to House leadership to include the MNEA in the end-of-year legislative package
Published: Nov 14, 2022
Tagged in: Medical Nutrition
NORD and the Medical Nutrition Equity Coalition sends letter to Senate leadership to include the MNEA in the end-of-year legislative package
Published: Nov 14, 2022
Tagged in: Medical Nutrition
NORD and American Cancer Society Cancer Action Network release biomarker testing fact sheet for Florida lawmakers
Published: Nov 8, 2022
Tagged in: Access to Diagnostics
Genetic Testing
NORD and American Cancer Society Cancer Action Network release biomarker testing fact sheet for Texas lawmakers
Published: Nov 8, 2022
Tagged in: Access to Diagnostics
Genetic Testing
NORD joins 8 patient organizations to improve coverage affordability in New Mexico
Published: Nov 8, 2022
Tagged in: Access to Affordable, Adequate Coverage
Out of Pocket Prescription Drug Costs
NORD and 23 other patient organizations submit recommendations to CMS on health equity issues related to the COVID-19 Public Health Emergency
Published: Nov 4, 2022
Tagged in: COVID-19
Medicare, Medicaid, and Private Health Insurance Coverage
NORD joins other patient organizations to submit comments on the “Streamlining the Medicaid, Children’s Health Insurance Program, and Basic Health Program Application, Eligibility Determination, Enrollment, and Renewal Processes Proposed Rule”
Published: Nov 4, 2022
Tagged in: Medicare, Medicaid, and Private Health Insurance Coverage
NORD joins other patient organizations in opposing the Professional Employer Organization Registration Act
Published: Oct 27, 2022
Tagged in: Affordable Care Act
NORD submits letter of support to the PA Majority Leader in support of Senate Bill 225 on step therapy reform
Published: Oct 24, 2022
Tagged in: Access to Affordable, Adequate Coverage
NORD joins 24 other patient organizations submit comments on the Section 1557 Proposed rule of the Affordable Care Act
Published: Oct 14, 2022
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
NORD and 21 patient organizations praise “Family Glitch” fix
Published: Oct 11, 2022
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
NORD and other patient organizations submit comments on Tennessee’s TennCare program amendment
Published: Oct 7, 2022
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
One in 10 Americans lives with rare disease, many of whom fight a daily battle to access the care and support they need. Your gift to the National Organization for Rare Disorders (NORD®) funds life-changing programs and helps us advance policies and research to ensure that everyone gets the care they need AND deserve.
