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 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 letter to the Louisiana Senate Insurance Committee in support of House Bill 263 to update the state’s step therapy law
Published: May 26, 2020
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
Coalition letter to the Centers for Medicare and Medicaid Services supporting the inclusion of a mechanism to spread out Medicare Part D out-of-pocket costs over the course of a year in the Part D Modernization Model
Published: May 22, 2020
Tagged in: Access to Affordable, Adequate Coverage
Out of Pocket Prescription Drug Costs
Coalition letter to Congressional leadership urging an end to all surprise medical billing
Published: May 21, 2020
Tagged in: Access to Affordable, Adequate Coverage
Surprise Medical Billing
Coalition letter to the White House urging an end to all surprise medical billing
Published: May 21, 2020
Tagged in: Access to Affordable, Adequate Coverage
Surprise Medical Billing
Coalition letter urging the Department of Health and Human Services to issue additional guidance to prevent discrimination for triaging and health care during the COVID-19 pandemic
Published: May 20, 2020
Tagged in: Anti-discrimination
COVID-19
Coalition statement to Virginia Governor Northam thanking him for vetoing three risky health insurance bills (SB 861, SB 235, and HB 795) that would have allowed new types of health insurance to come to Virginia’s state-regulate health insurance market
Published: May 20, 2020
Tagged in: Access to Affordable, Adequate Coverage
Short-Term, Limited-Duration Health Plans and Association Health Plans
Coalition letter to Louisiana Insurance Commissioner in support of resuming LDI Rule 40 to protect against the loss of health coverage due to inability to pay premiums for 90 days after the end of Louisiana’s COVID-19 emergency declaration
Published: May 19, 2020
Tagged in: Access to Care
COVID-19
Coalition letter to Virginia Governor Northam urging him to veto Senate Bill 861 and Senate Bill 235/House Bill 795
Published: May 18, 2020
Tagged in: Access to Affordable, Adequate Coverage
Short-Term, Limited-Duration Health Plans and Association Health Plans
Coalition statement urging the Supreme Court to Uphold the Affordable Care Act (ACA)
Published: May 13, 2020
Tagged in: Anti-discrimination
COVID-19
NORD comments to Michigan on their Medicaid Health Plan Common Formulary
Published: May 13, 2020
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
Coalition letter to the Louisiana House Committee on Insurance in support of House Bill 263, to reform step therapy protections for patients
Published: May 12, 2020
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
Coalition letter to the South Dakota Federal Congressional Delegation to express support for federal step therapy reform legislation
Published: May 12, 2020
Tagged in: Access to Affordable, Adequate Coverage
Access to Care
COVID-19
Utilization Management
NORD testimony to Louisiana in support of House Bill 263, legislation to reform step therapy protections
Published: May 12, 2020
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
Coalition letter to Louisiana Governor Edwards requesting the state adopt a policy that refrains from discriminating against people with disabilities and chronic conditions during the COVID-19 emergency
Published: May 8, 2020
Tagged in: Anti-discrimination
COVID-19
Coalition letter to Connecticut Governor Lamont on the state’s document titled “Standards of Care: Providing Health Care During A Prolonged Public Health Emergency” and requesting that he continue to work with the disability and chronic care community as the state develops additional guidance during COVID-19
Published: May 8, 2020
Tagged in: Anti-discrimination
COVID-19
Coalition letter to New Hampshire Governor Sununu requesting the state adopt a policy that refrains from discriminating against people with disabilities and chronic conditions during the COVID-19 emergency
Published: May 7, 2020
Tagged in: Anti-discrimination
COVID-19
Coalition letter to Senate leadership urging the inclusion of bridge funding for stalled research in the next COVID-19 relief package
Published: May 6, 2020
Tagged in: COVID-19
Funding for Ongoing Science
Coalition letter to HHS urging allowance of copay assistance to count toward annual cost sharing in 2021 Notice of Benefit & Payment Parameters
Published: May 5, 2020
Tagged in: Access to Affordable, Adequate Coverage
Copay Assistance
Coalition letter to New Jersey Governor Murphy highlighting concerns in recent guidance and requesting that he continue to work with the disability and chronic care community as the state develops additional guidance during COVID-19
Published: May 1, 2020
Tagged in: Anti-discrimination
COVID-19
Coalition letter to New York Governor Cuomo to express concerns over the state’s ventilator allocation guidelines during COVID-19
Published: Apr 30, 2020
Tagged in: Anti-discrimination
COVID-19
NORD letter to the Massachusetts Joint Health Care Financing Committee in support of H.4268, to create a Rare Disease Advisory Council
Published: Apr 30, 2020
Tagged in: Rare Disease Advisory Councils (RDACs)
Coalition letter to Texas Governor Abbott requesting the state adopt a policy that refrains from discriminating against people with disabilities and chronic conditions during the COVID-19 emergency
Published: Apr 29, 2020
Tagged in: Anti-discrimination
COVID-19
NORD comments to Oklahoma regarding their Section 1115 waiver application
Published: Apr 27, 2020
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
Coalition letter to Florida Governor Desantis requesting the state adopt a policy that refrains from discriminating against people with disabilities and chronic conditions during the COVID-19 emergency
Published: Apr 27, 2020
Tagged in: Anti-discrimination
COVID-19
Coalition letter to Virginia Governor Northam requesting the state adopt a policy that refrains from discriminating against people with disabilities and chronic conditions during the COVID-19 emergency
Published: Apr 27, 2020
Tagged in: Anti-discrimination
COVID-19
Coalition statement of support for H.R. 6514, the Worker Health Coverage Protection Act
Published: Apr 24, 2020
Tagged in: Access to Care
COVID-19
NORD letter of support for AB 2283 to create California’s Rare Disease Ombudsperson and Rare Disease Advisory Council
Published: Apr 22, 2020
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD letter to the Chair of the California Assembly Health Committee in support of AB 2124, to create to create common-sense utilization management protections for patients
Published: Apr 22, 2020
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
Coalition letter to Congressional leadership urging guardrails on the use of step therapy protocols in Medicare and Medicaid during COVID-19
Published: Apr 20, 2020
Tagged in: Access to Affordable, Adequate Coverage
Access to Care
COVID-19
Utilization Management
Coalition letter to the Virginia General Assembly urging them to support Governor Northam’s recommendation for three bills: SB 861, SB 235 and HB 795
Published: Apr 18, 2020
Tagged in: Access to Affordable, Adequate Coverage
Short-Term, Limited-Duration Health Plans and Association Health Plans
Coalition letter to the Governor of Kansas expressing concerns over a “Toolkit for COVID-19” issued by the Department of Health that could discriminate against older Americans and those the pre-existing conditions
Published: Apr 16, 2020
Tagged in: Anti-discrimination
COVID-19
Coalition letter Urging HHS to Prevent Discrimination For Triaging and Health Care During COVID-19
Published: Apr 16, 2020
Tagged in: Anti-discrimination
COVID-19
Coalition letter to Congress to further strengthen health insurance coverage, affordability, and accessibility in the next COVID-19 relief package
Published: Apr 14, 2020
Tagged in: Access to Care
COVID-19
NORD comments to New Hampshire regarding its Section 1332 waiver
Published: Apr 13, 2020
Tagged in: Access to Affordable, Adequate Coverage
Section 1332 Waivers
Coalition comments to CMS in support of Pennsylvania’s efforts to establish a reinsurance program
Published: Apr 10, 2020
Tagged in: Access to Affordable, Adequate Coverage
Section 1332 Waivers
Coalition letter to Kentucky Representative Bentley in support of the state taking the state taking executive action to ban copay accumulator programs during COVID-19
Published: Apr 9, 2020
Tagged in: Access to Care
COVID-19
Coalition letter to Congressional leadership urging Congress to expand eligibility for the paid family and medical leave program to high risk individuals and their families
Published: Apr 9, 2020
Tagged in: COVID-19
Paid Leave
Coalition letter to Congressional leaders to enact legislation to permanently end all surprise medical billing when seeking treatment for COVID-19 and other medical conditions
Published: Apr 8, 2020
Tagged in: Access to Affordable, Adequate Coverage
Access to Care
COVID-19
Surprise Medical Billing
Coalition letter to Ohio Representative Manchester in support of the state taking executive action to ban copay accumulator programs during COVID-19
Published: Apr 7, 2020
Tagged in: Access to Affordable, Adequate Coverage
Access to Care
Copay Assistance
COVID-19
Coalition comments to CMS on the proposed rule for policy and technical changes to Medicare Part D & Medicare Advantage
Published: Apr 6, 2020
Tagged in: Access to Affordable, Adequate Coverage
Out of Pocket Prescription Drug Costs
Coalition letter in support of including the Protecting Seniors Through Immunization Act in the next COVID-19 response legislative package
Published: Apr 6, 2020
Tagged in: Access to Care
COVID-19
Coalition letter urging the Administration to take action to alleviate the ventilator and protective personal equipment shortage
Published: Apr 3, 2020
Tagged in: Access to Care
Anti-discrimination
COVID-19
Coalition statement urging the Administration to create a special enrollment period for the healthcare.gov marketplace
Published: Apr 1, 2020
Tagged in: Access to Care
COVID-19
Coalition letter to HHS and CMS urging decisive action to slow the spread of COVID-19 among people with pre-existing conditions and vulnerable populations
Published: Mar 30, 2020
Tagged in: Access to Care
COVID-19
NORD/EURORDIS-Rare Diseases Europe joint statement on COVID-19 and orphan drug legislation
Published: Mar 30, 2020
Tagged in: COVID-19
Coalition letter to Virginia Governor Northam asking him to add patient coverage details to the Short Term Limited Duration bills (SB 404/ HB 1037)
Published: Mar 27, 2020
Tagged in: Access to Affordable, Adequate Coverage
Short-Term, Limited-Duration Health Plans and Association Health Plans
Coalition comments to Virginia Governor asking him to veto Senate Bill 861, and Senate Bill 235/House Bill 795 that would allow for Association Health Plans
Published: Mar 27, 2020
Tagged in: Access to Affordable, Adequate Coverage
Short-Term, Limited-Duration Health Plans and Association Health Plans
NORD comments in support of FDA Rare Disease Day 2020: Supporting the Future of Rare Disease Product Development
Published: Mar 27, 2020
Tagged in: Access to Innovative Medicines and Therapies
Advancing Rare Disease Research and Regulatory Science
Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP)
Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP)
NORD letter to Governors asking that they loosen their state licensure requirements to better facilitate telemedicine across state lines
Published: Mar 26, 2020
Tagged in: COVID-19
Telehealth
NORD comments to CMS regarding its request for information on coordinating care from out-of-state providers for Medicaid eligible children with medically complex conditions
Published: Mar 23, 2020
Tagged in: Access to Affordable, Adequate Coverage
Out-of-State Care for Children on Medicaid
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