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 and several patient organizations thank Arkansas Rep. Michelle Gray for cosponsoring SB 143, a bill to create a Rare Disease Advisory Council
Published: Mar 1, 2021
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD Joins Ohio Alliance for the Advancement of Telehealth in Supporting Ohio H.B. 122
Published: Feb 24, 2021
Tagged in: Telehealth
NORD joins coalition testimony opposing Ohio Senate Bill 17 to the Government Oversight and Reform Committee
Published: Feb 24, 2021
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
NORD Ambassador testimony opposing Ohio Senate Bill 17 to the Government Oversight and Reform Committee
Published: Feb 24, 2021
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
NORD joins a coalition amicus curiae brief to the United States Supreme Court opposing the use of work requirements in the Medicaid program.
Published: Feb 24, 2021
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD testimony on House Bill 5081 to the Rhode Island House Health and Human Services Committee
Published: Feb 23, 2021
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD Testimony on Missouri House Bill 995 to Special Committee on Government Oversight
Published: Feb 23, 2021
Tagged in: Research
NORD joins a coalition letter to the Minnesota House Commerce Finance and Policy Committee in support of House File 633
Published: Feb 22, 2021
Tagged in: Access to Affordable, Adequate Coverage
Out of Pocket Prescription Drug Costs
NORD, the ALS Association, Muscular Dystrophy Association and Cystic Fibrosis Foundation letter to CDC Director, Dr. Rochelle Walensky, requesting additional guidance from CDC to ensure rare disease patients have access to the COVID-19 vaccine
Published: Feb 17, 2021
Tagged in: Access to Care
COVID-19
Coalition letter to South Dakota Governor Noem requesting a veto of Senate Bill 87
Published: Feb 14, 2021
Tagged in: Access to Affordable, Adequate Coverage
Short-Term, Limited-Duration Health Plans and Association Health Plans
NORD and Rare Action Network Volunteer submit written testimony in support of Virginia Rare Disease Advisory Council (RDAC) legislation
Published: Feb 11, 2021
Tagged in: Rare Disease Advisory Councils (RDACs)
Coalition Statement in Support of Medicaid Coverage Provisions in COVID-19 Relief Package
Published: Feb 11, 2021
Tagged in: Access to Care
COVID-19
NORD Letter of Support to the Senate Finance Committee on the Nomination of Attorney General Xavier Becerra to be Secretary of HHS
Published: Feb 11, 2021
Tagged in: Access to Affordable, Adequate Coverage
NORD Letter of Support to the Senate HELP Committee on the Nomination of Attorney General Xavier Becerra to be Secretary of HHS
Published: Feb 11, 2021
Tagged in: Access to Affordable, Adequate Coverage
Coalition one-pager opposing South Dakota Senate Bill 87, a bill with serious risks for South Dakotans with pre-existing conditions
Published: Feb 10, 2021
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
Coalition Statement to the House Ways and Means committee on COVID-19 relief measures
Published: Feb 10, 2021
Tagged in: Access to Care
COVID-19
NORD and Rare Action Network Volunteers submit written testimony in support of New Jersey Rare Disease Advisory Council (RDAC) legislation
Published: Feb 9, 2021
Tagged in: Rare Disease Advisory Councils (RDACs)
Coalition letter to the Virginia House of Delegates in support of a reinsurance program for Virginia’s health insurance marketplace.
Published: Feb 5, 2021
Tagged in: Access to Affordable, Adequate Coverage
Section 1332 Waivers
NORD letter to the Arkansas Speaker of the House regarding step therapy reform
Published: Feb 5, 2021
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
Rare Action Network Volunteer Ambassador submit written testimony in support of Arkansas Rare Disease Advisory Council (RDAC) legislation
Published: Feb 5, 2021
Tagged in: Rare Disease Advisory Councils (RDACs)
Coalition statement asking that the Administration rescind policies that would jeopardize access to medically necessary prescription drugs.
Published: Feb 4, 2021
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
Coalition comment letter on proposed extension of Arizona’s 1115 Demonstration Project
Published: Feb 4, 2021
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD letter to Oregon House Committee on Health Care in support of HB 2508, a bill to improve telehealth access
Published: Feb 3, 2021
Tagged in: Telehealth
NORD and Rare Action Network Volunteers submit written testimony in support of Florida Rare Disease Advisory Council (RDAC) legislation
Published: Feb 3, 2021
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD Letter to the Arkansas House Public Health, Welfare and Labor Committee regarding step therapy reform
Published: Feb 3, 2021
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
NORD Letter to the Arizona Senate Health and Human Serivces Committee regarding step therapy reform
Published: Feb 3, 2021
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
Coalition letter to Chair of the Oregon Senate Committee on Health Care regarding copay assistance
Published: Feb 2, 2021
Tagged in: Access to Affordable, Adequate Coverage
Copay Assistance
NORD Letter to Nebraska Banking, Commerce and Insurance Committee Regarding Step Therapy Legislation
Published: Feb 1, 2021
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
Patient Community Health Care Priorities for Reconciliation
Published: Feb 1, 2021
Tagged in: Access to Affordable, Adequate Coverage
COVID-19
Patient Community Priorities for Future COVID-19 Legislation
Published: Feb 1, 2021
Tagged in: COVID-19
Patient organizations applaud Executive Orders to protect patients with pre-existing conditions.
Published: Jan 28, 2021
Tagged in: Access to Affordable, Adequate Coverage
Coalition Press Release Urging Connecticut Department of Health to Issue Guidance Prevent Discriminatory Rationing of COVID-19 Care
Published: Jan 26, 2021
Tagged in: Anti-discrimination
COVID-19
Coalition one-pager in support of Arizona Senate Bill 1270, a bill regarding step therapy protocols
Published: Jan 22, 2021
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
NORD letter of thanks to Senator Missy Irvin, sponsor of Arkansas SB 143, a bill to create a Rare Disease Advisory Council
Published: Jan 22, 2021
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD letter of thanks to Rep. Michelle Gray, sponsor of Arkansas SB 143, a bill to create a Rare Disease Advisory Council
Published: Jan 22, 2021
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD Submits Written Testimony in Support of Virginia Rare Disease Advisory Council (RDAC) Legislation
Published: Jan 20, 2021
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD Letter to the Arkansas Senate Public Health, Welfare and Labor Committee Regarding Step Therapy Reform
Published: Jan 20, 2021
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
Coalition one-pager on Nebraska step therapy reform
Published: Jan 20, 2021
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
Step Therapy Reform Sign On Letter – Arkansas
Published: Jan 19, 2021
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
Coalition letter to the Tennessee Legislature urging them to oppose the Tenncare Waiver
Published: Jan 14, 2021
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
Alliance for Connected Care Consensus Principles on Telehealth Across State Lines
Published: Jan 13, 2021
Tagged in: Telehealth
Coalition letter to HHS opposing the fast-tracking of Texas’s 1115 waiver proposal.
Published: Jan 13, 2021
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
Coalition statement opposing approval of a Medicaid block grant in Tennessee.
Published: Jan 8, 2021
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
Coalition letter to incoming Administration urging the immediate recension of guidance to state Medicaid programs regarding work and community engagement requirements.
Published: Jan 8, 2021
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
Letter Expressing Support for the New York Rare Disease Workgroup
Published: Jan 5, 2021
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD comment letter regarding a proposed rule to reform prior authorization processes
Published: Jan 4, 2021
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
Coalition comments on the Notice of Benefit and Payment Parameters 2022 proposed rule
Published: Dec 29, 2020
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Coalition comments on the Patient Protection and Affordable Care Act and the Notice of Benefit and Payment Parameters for 2022
Published: Dec 28, 2020
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
NORD comments on the Notice of Benefit and Payment Parameters for 2022 proposed rule
Published: Dec 22, 2020
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
NORD Letter to Advisory Committee on Immunization Practices (ACIP) Regarding Rare Disease Patient Vaccine Prioritization
Published: Dec 18, 2020
Tagged in: COVID-19
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