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 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
Coalition comments on changes to Medicaid maintenance of effort requirements that could lead to gaps in coverage
Published: Dec 18, 2020
Tagged in: Access to Care COVID-19
Patient Groups Call on Congress to Permanently End Surprise Medical Billing
Published: Dec 16, 2020
Tagged in: Access to Affordable, Adequate Coverage Surprise Medical Billing
Coalition letter to Oklahoma Governor Stitt regarding the state’s draft crisis standards of care
Published: Dec 11, 2020
Tagged in: Anti-discrimination COVID-19
Coalition letter to New Mexico Governor Lujan Grisham regarding the state’s draft crisis standards of care
Published: Dec 11, 2020
Tagged in: Anti-discrimination COVID-19
Coalition letter to Montana Governor Bullock regarding the state’s draft crisis standards of care
Published: Dec 11, 2020
Tagged in: Anti-discrimination COVID-19
NORD submits amicus brief for State of New York vs. United States Department of Health and Human Services opposing the rule promulgated by HHS that allows discrimination in provision of health care services
Published: Dec 9, 2020
Tagged in: Access to Affordable, Adequate Coverage Affordable Care Act
Coalition letter to Congressional Leadership urging swift action on telehealth
Published: Dec 9, 2020
Tagged in: Telehealth
Patient Groups Urge U.S. District Court to Prevent Discrimination Against LGBTQ Patients
Published: Dec 9, 2020
Tagged in: Access to Affordable, Adequate Coverage Affordable Care Act
Coalition letter urging Congress to pass comprehensive surprise medical billing protections for patients and consumers in an end of year legislative package
Published: Dec 4, 2020
Tagged in: Access to Affordable, Adequate Coverage Surprise Medical Billing
Coalition comments on Proposed Rule HHS– OS–2020–0012, “Securing Updated and Necessary Statutory Evaluations Timely”
Published: Dec 4, 2020
Tagged in: Access to Affordable, Adequate Coverage Medicare, Medicaid, and Private Health Insurance Coverage
Coalition letter asking Congress to fund research, development, and vital public health agencies.
Published: Dec 2, 2020
Tagged in: COVID-19 Funding for Ongoing Science
NORD letter to New Hampshire Health and Human Services Commissioner Shibinette following up on the state’s crisis standards of care guidelines.
Published: Dec 1, 2020
Tagged in: Anti-discrimination COVID-19
Coalition letter to Michigan House Ways and Means Committee in support of HB 5944, a bill regarding copay assistance.
Published: Nov 30, 2020
Tagged in: Access to Affordable, Adequate Coverage Copay Assistance
Coalition letter to the Massachusetts House of Representatives regarding step therapy protocols.
Published: Nov 23, 2020
Tagged in: Access to Affordable, Adequate Coverage Utilization Management
Coalition letter to Massachusetts Budget Conferees requesting extension of the state law allowing the use of manufacturer copay assistance.
Published: Nov 23, 2020
Tagged in: Access to Affordable, Adequate Coverage Copay Assistance
Coalition letter to President-Elect Biden outlining recommendations to ensure affordable and accessible health coverage during the COVID-19 pandemic.
Published: Nov 23, 2020
Tagged in: Access to Care COVID-19
