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 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
NORD comments on the draft proposal for the five-year renewal of Arizona’s Demonstration project under Section 1115 of the Social Security Act.
Published: Nov 20, 2020
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD letter to Virginia lawmakers on ensuring access to medications through the state Medicaid program.
Published: Nov 20, 2020
Tagged in: Access to Affordable Medicines
Coalition letter to South Dakota Governor Noem urging the state to adopt crisis standards of care guidelines.
Published: Nov 19, 2020
Tagged in: Anti-discrimination
COVID-19
Coalition letter to North Dakota Governor Burgum urging the state to adopt crisis standards of care guidelines.
Published: Nov 19, 2020
Tagged in: Anti-discrimination
COVID-19
Coalition letter to Arkansas Governor Hutchinson urging the state to adopt crisis standards of care guidelines.
Published: Nov 19, 2020
Tagged in: Anti-discrimination
COVID-19
Coalition letter to Indiana Governor Holcomb urging the state to adopt crisis standards of care guidelines.
Published: Nov 19, 2020
Tagged in: Anti-discrimination
COVID-19
NORD, ADA, NPF Letter on Telehealth Copay Changes to Insurers
Published: Nov 12, 2020
Tagged in: Telehealth
NORD letter to the Ohio House Health Committee in support of HB 469, a bill regarding copay accumulators.
Published: Nov 10, 2020
Tagged in: Access to Affordable, Adequate Coverage
Copay Assistance
Coalition statement urging the U.S. Supreme Court to prioritize patient protections, including those for people with pre-existing conditions, when it hears oral arguments Tuesday in the case of California v. Texas.
Published: Nov 9, 2020
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
NORD comment letter on a proposed new definition of “reasonable and necessary” to help determine coverage of items and services under Medicare.
Published: Nov 2, 2020
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
Coalition comments on Washington’s proposed rule R-2019-11, a rule regarding prescription drug utilization management.
Published: Oct 26, 2020
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
Coalition comments on South Dakota’s proposed rule regarding short-term, limited-duration health plans and short-term major medical plans.
Published: Oct 23, 2020
Tagged in: Access to Affordable, Adequate Coverage
Short-Term, Limited-Duration Health Plans and Association Health Plans
NORD letter to the Chairman of the New Jersey General Assembly Health Committee in support of Assembly bill 4815, a bill regarding step therapy protocols.
Published: Oct 21, 2020
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
Medicare Part D Open Enrollment guide from the MAPRx Coalition
Published: Oct 20, 2020
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
Stakeholder letter endorsing the Accelerating Kids Access to Care Act, to improve access to out-of-state providers for children with complex medical conditions in Medicaid.
Published: Oct 20, 2020
Tagged in: Access to Affordable, Adequate Coverage
Out-of-State Care for Children on Medicaid
Coalition statement on the approval of Georgia’s 1115 waiver and pending approval of the state’s 1332 waiver, which reduce access to comprehensive health insurance for patients.
Published: Oct 16, 2020
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
Section 1332 Waivers
Press release regarding “The 100 Days Report: A Patient-First Blueprint,” a coalition report outlining recommendations for the first 100 days of the next Administration and Congress.
Published: Oct 13, 2020
Tagged in: Access to Affordable, Adequate Coverage
Coalition report outlining recommendations for the first 100 days of the next Administration and Congress.
Published: Oct 13, 2020
Tagged in: Access to Affordable, Adequate Coverage