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 Urges Congress to Reauthorize the Rare Pediatric Disease Priority Review Voucher Program: H.R. 7384, the Creating Hope Reauthorization Act
Published: May 9, 2024
Tagged in: Advancing Rare Disease Research and Regulatory Science
NORD Joins a Letter of Support on Innovation in Pediatric Drugs Act of 2023 (H.R. 6664)
Published: May 8, 2024
Tagged in: Access to Innovative Medicines and Therapies
Advancing Rare Disease Research and Regulatory Science
NORD joins letter of support urging funding for the Pediatric Device Consortia Grant Program
Published: May 6, 2024
Tagged in: Access to Innovative Medicines and Therapies
Advancing Rare Disease Research and Regulatory Science
NORD joins letter supporting H.R. 5397, a bill to increase access to home infusion for Medicare patients
Published: May 3, 2024
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
NORD Supports H7363 (Kennedy)/S2390 (Lawson) – Establishes a Rare Disease Advisory Council in the State of Rhode Island
Published: Apr 30, 2024
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD joins leading patient groups in submitting comments to CMS on M3P model documents
Published: Apr 29, 2024
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
Out of Pocket Prescription Drug Costs
NORD Sends Comments Regarding Colorado SB24-203
Published: Apr 26, 2024
Tagged in: Out of Pocket Prescription Drug Costs
Rare Disease Advisory Councils (RDACs)
NORD Joins 32 Patient Organizations in Applauding the Release of Section 1557 of the Affordable Care Act Rule to Protect All Patients from Discrimination When Accessing Health Care
Published: Apr 26, 2024
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
NORD joins leading patient groups in providing comments to CMS on Florida’s 1115 CHIP eligibility extension
Published: Apr 24, 2024
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
NORD Joins the All Copays Count Coalition in Writing to the Insurance Commissioners of all 50 States Encouraging them to Enforce the 2020 NBPP Provision Restricting the Use of Copay Accumulator Adjusters
Published: Apr 19, 2024
Tagged in: Copay Assistance
NORD Responds to Proposed Amendments Offered by Health Plans to Step Therapy Provisions of Vermont H.766 (Black)
Published: Apr 18, 2024
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
Access to Innovative Medicines and Therapies
Utilization Management
NORD submits comments to Colorado State, Veterans, and Military Affairs Committee on SB24-203
Published: Apr 17, 2024
NORD & Patient Organizations Ask Mississippi Governor Tate Reeves to Sign SB2156 MS RDAC Bill Into Law
Published: Apr 4, 2024
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD and 34 Patient Organizations Celebrate Biden Administration’s Rule to Protect Patients from Short-Term Health Plans
Published: Mar 28, 2024
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
NORD Sends Letter of Support to Vermont Senate Health for H.766 Relating to Step Therapy Reforms
Published: Mar 27, 2024
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
Access to Innovative Medicines and Therapies
Utilization Management
NORD & 22 Patient Organizations Issue Letter of Support & Recommendations for MS RDAC Bills HB616/SB2156
Published: Mar 25, 2024
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD Submits Statement for the Record on the LDT Hearing
Published: Mar 21, 2024
Tagged in: Access to Innovative Medicines and Therapies
Advancing Rare Disease Research and Regulatory Science
NORD Signs On To Letter Urging Congress to Swiftly Pass Pharmacy Benefit Manager (PBM) Reforms That Ensure Patient Access to More Affordable Healthcare
Published: Mar 19, 2024
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
NORD Issues Letter of Support for Rhode Island S2611/H7822 Regarding Step Therapy Protocols
Published: Mar 18, 2024
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
Access to Innovative Medicines and Therapies
Utilization Management
NORD joins coalition of leading patient organizations in submitting comments to CMS on the Medicare Prescription Payment Plan (MPPP) Part 2 Draft Guidance
Published: Mar 15, 2024
NORD submits comments to CMS in response to the Medicare Prescription Payment Plan (MPPP) Draft Guidance – Part Two
Published: Mar 15, 2024
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
Out of Pocket Prescription Drug Costs
NORD Signs On to A Letter to The Committee on Education and the Workforce Request for Information on Employer-Sponsored Insurance and Employee Retirement Income Security Act (ERISA)
Published: Mar 15, 2024
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
NORD with the Safe Step Act Ad Hoc Coalition Submit Comments for the Committee’s RFI On The Employee Retirement Income Security Act (ERISA) with Recommendations to Reform Step Therapy and Mark Up Safe Step Act (H.R. 2630)
Published: Mar 15, 2024
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
Access to Innovative Medicines and Therapies
NORD Issues Letter of Support for New Jersey A1825 Regarding Step Therapy Protocols
Published: Mar 13, 2024
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
Access to Innovative Medicines and Therapies
Utilization Management
NORD joins leading patient organizations in submitting comments to CMS on Pennsylvania 1115 waiver
Published: Mar 13, 2024
NORD Joins Patient Organizations in Support of New Jersey A1825 Establishing Step Therapy Protocols
Published: Mar 13, 2024
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
Out of Pocket Prescription Drug Costs
Utilization Management
NORD Sends Letter of Support to the Vermont House for Provisions of Vermont H.766 Relating to Step Therapy Requirements
Published: Mar 12, 2024
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
Access to Innovative Medicines and Therapies
NORD Sends Letter of Support On Tennessee HB1973 – An Act Relative to Newborn Screening
Published: Mar 12, 2024
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
NORD Submits Testimony on Biomarker Coverage in Nevada
Published: Mar 11, 2024
Tagged in: Access to Innovative Medicines and Therapies
NORD Joins California Patient Groups in Support of AB2613 to Create an RDAC in California
Published: Mar 11, 2024
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD joins 17 patient organizations in urging CMS to approve Minnesota continuous eligibility amendment
Published: Mar 6, 2024
NORD joins leading patient organizations in submitting comments to CMS on Hawaii 1115 waiver
Published: Mar 6, 2024
NORD Sends a Letter of Support for S.B. No. 175, An Act Concerning Funds for the CT RDAC
Published: Mar 5, 2024
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD submits letter in support of CT S.B. No. 206, concerning the expansion of the Katie Beckett Waiver program
Published: Mar 5, 2024
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
NORD Supports SB5821 in Washington to Protect Audio-Only Telehealth Services
Published: Mar 5, 2024
Tagged in: Telehealth
NORD Joins Michigan-Based and National Organizations Representing Patients and Their Providers Support H.B. 5339 Protect Michiganders from Harmful Step Therapy Protocols
Published: Mar 4, 2024
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
Access to Innovative Medicines and Therapies
Utilization Management
NORD and other stakeholders submit letter to Congress urging passage of the PASTEUR Act
Published: Feb 29, 2024
Tagged in: Funding for Ongoing Science
Public Health
Research
NORD submits statement for the record in advance of crucial Rare Disease Day hearing
Published: Feb 28, 2024
Tagged in: Access to Affordable, Adequate Coverage
Access to Innovative Medicines and Therapies
Advancing Rare Disease Research and Regulatory Science
Out-of-State Care for Children on Medicaid
NORD Joins Patient Organizations in Raising Concern with Kentucky Bill Proposal to Institute a State Coverage Benefit Mandate Defrayal Process
Published: Feb 27, 2024
Tagged in: Access to Affordable, Adequate Coverage
NORD joins leading patient groups in urging HHS to finalize crucial rules with significant impacts on patient access
Published: Feb 26, 2024
Tagged in: Access to Affordable, Adequate Coverage
NORD joins leading patient and provider groups in urging Congress to act on telehealth
Published: Feb 22, 2024
Tagged in: Telehealth
NORD joins leading patient organizations in providing comments to Florida on expanding eligibility for Children’s Health Insurance Program (CHIP)
Published: Feb 21, 2024
Tagged in: Access to Affordable, Adequate Coverage
NORD joins 21 other patient organizations in urging the Department of Labor to rescind 2018 Association Health Plan Final Rule
Published: Feb 21, 2024
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 Supports Access to Out-of-State Telehealth Providers for Coloradans with Support of SB24-141
Published: Feb 21, 2024
Tagged in: Telehealth
NORD submits comments to CMS urging adequate reimbursement for orphan therapies in the inpatient setting
Published: Feb 21, 2024
Tagged in: Medicare, Medicaid, and Private Health Insurance Coverage
NORD’s Statement in Support for Reauthorization of Rare Pediatric Disease Priority Review Voucher Program
Published: Feb 15, 2024
Tagged in: Access to Innovative Medicines and Therapies
Advancing Rare Disease Research and Regulatory Science
Research
NORD is Proud to Support Rare Disease Advisory Council Bill HB2758 in Arizona
Published: Feb 7, 2024
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD submits comments to NIST on 88 FR 86693, the Draft Interagency Guidance Framework for the Exercise of March-In Rights
Published: Feb 6, 2024
Tagged in: Access to Affordable Medicines
NORD Supports HF2157 to Ensure Coverage of Biomarker Testing in Iowa
Published: Feb 5, 2024
Tagged in: Access to Affordable, Adequate Coverage
NORD joins leading patient organizations in submitting comments to CMS on Medicaid Unwinding IFR
Published: Feb 2, 2024
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
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