NORD Comments on CMS IFR on Community Engagement (Work) Requirements
Published: Jul 29, 2026
NORD on the Issues
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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 Comments on CMS IFR on Community Engagement (Work) Requirements
Published: Jul 29, 2026
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 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
NORD and partners release the 2023 Medicare Part D open enrollment guide
Published: Oct 4, 2022
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
NORD sends letter with the All Copays Count Coalition to CMS to address copay accumulator adjustment policies in the 2024 Notice of Benefit and Payment Parameters
Published: Sep 29, 2022
Tagged in: Access to Affordable, Adequate Coverage
Copay Assistance
Out of Pocket Prescription Drug Costs
NORD sends comments to FDA on clinical outcome assessments
Published: Sep 27, 2022
Tagged in: Access to Innovative Medicines and Therapies
Advancing Rare Disease Research and Regulatory Science
Patient Focused Drug Development
NORD and other patient organizations urge the Supreme Court to protect patient rights under Medicaid
Published: Sep 23, 2022
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
NORD joins 20 organizations to send letter of support on patient protections and consumer-focused policies to Secretary Becerra
Published: Sep 13, 2022
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
NORD joins 375 organizations urging Senate leadership to take action on telehealth
Published: Sep 13, 2022
Tagged in: Telehealth
NORD and 55 organizations urge Senate HELP committee to take action on S. 350, The Newborn Screening Saves Lives Reauthorization Act of 2021
Published: Sep 12, 2022
Tagged in: Access to Diagnostics
Newborn Screening
NORD and 109 organizations send letter to Senate Finance and House Energy and Commerce in support of the Accelerating Kids’ Access to Care Act
Published: Sep 8, 2022
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
Out-of-State Care for Children on Medicaid
NORD and other patient organizations respond to ruling in Braidwood v Becerra
Published: Sep 8, 2022
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
NORD letter to CA Governor Newsom in support of California AB 1880, utilization management reform legislation
Published: Sep 1, 2022
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
NORD and 24 organizations send letter to Governor Newsom urging the passage of SB 912
Published: Sep 1, 2022
Tagged in: Access to Diagnostics
Genetic Testing
NORD and 11 organizations submit comments to Secretary Becerra on the Washington Medicaid Transformation Project Waiver Renewal
Published: Aug 31, 2022
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD and 15 organizations send feedback on the Tennessee TennCare Medicaid program
Published: Aug 19, 2022
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD and 50 organizations urge Secretary Becerra to strengthen current 1115 regulations
Published: Aug 17, 2022
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
Medicare, Medicaid, and Private Health Insurance Coverage
NORD statement on the passage of the Inflation Reduction Act
Published: Aug 12, 2022
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Medicare, Medicaid, and Private Health Insurance Coverage
NORD and 27 other organization applaud major health care improvements under the Inflation Reduction Act
Published: Aug 12, 2022
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Medicare, Medicaid, and Private Health Insurance Coverage
NORD and 26 organizations send letter to Congressional leadership to applaud expansion of APTC within the Inflation Reduction Act
Published: Aug 5, 2022
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Appropriations
NORD and 34 other organizations submit feedback on Medicare Part D in the Inflation Reduction Act of 2022
Published: Aug 4, 2022
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
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