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 Maine in support of LD 1009, step therapy reform legislation
Published: Mar 13, 2019
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
NORD letter to West Virginia in support of House Bill 2770
Published: Mar 6, 2019
Tagged in: Access to Affordable, Adequate Coverage
Copay Assistance
Coalition comments to Montana Governor Steve Bullock in support of Medicaid expansion
Published: Mar 4, 2019
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
Coalition letter requesting Virginia Governor Ralph Northam to veto legislation that could threaten coverage for those with pre-existing conditions
Published: Mar 4, 2019
Tagged in: Access to Affordable, Adequate Coverage
Short-Term, Limited-Duration Health Plans and Association Health Plans
MAPRx comments to CMS regarding Medicare Part D
Published: Mar 1, 2019
Tagged in: Access to Affordable, Adequate Coverage
Out of Pocket Prescription Drug Costs
NORD letter to Oregon in support of House Bill 2799, legislation to implement prescription out-of-pocket cost protections
Published: Feb 25, 2019
Tagged in: Access to Affordable, Adequate Coverage
Out of Pocket Prescription Drug Costs
Coalition comments to CMS and HHS regarding the Notice of Benefit and Payment Parameters for 2020
Published: Feb 19, 2019
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
NORD comments to CMS regarding the Department of Health and Human Services’ (HHS) Notice of Benefit and Payment Parameters for 2020
Published: Feb 19, 2019
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
NORD comments to Connecticut in support of House Bill 5860
Published: Feb 14, 2019
Tagged in: Access to Affordable, Adequate Coverage
Copay Assistance
Coalition letter to Wyoming in opposition to SF 144, legislation to implement a work requirement in its Medicaid program
Published: Feb 13, 2019
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD letter to Georgia in support of House Bill 63, a bill pertaining to step therapy reform
Published: Feb 12, 2019
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
NORD letter to Indiana in support of House Bill 1307, an act pertaining to copay assistance
Published: Feb 12, 2019
Tagged in: Access to Affordable, Adequate Coverage
Copay Assistance
Coalition letter to Mississippi regarding a patient advisory council for its Medicaid program
Published: Feb 8, 2019
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD letter to Washington in support of Senate Bill 5806, a bill pertaining to utilization management
Published: Feb 8, 2019
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
Coalition comments to CMS regarding Tennessee’s Section 1115 Waiver
Published: Feb 7, 2019
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD letter to Arizona regarding copay assistance
Published: Feb 6, 2019
Tagged in: Access to Affordable, Adequate Coverage
Copay Assistance
NORD letter to Minnesota regarding SF 165, a bill pertaining to Emergency Medical Services (EMS) protocols
Published: Feb 6, 2019
Tagged in: Access to Affordable, Adequate Coverage
Emergency Medical Services
NORD comments to FDA on the Framework for the Real-World Evidence Program
Published: Feb 5, 2019
Tagged in: Access to Innovative Medicines and Therapies
Patient Focused Drug Development
NORD letter to Oregon regarding Senate Bill 452, a bill pertaining to Emergency Medical Services (EMS) protocols
Published: Feb 4, 2019
Tagged in: Access to Affordable, Adequate Coverage
Emergency Medical Services
Coalition comments to Utah in opposition of bills seeking to restrict the voter-approved expansion of Medicaid
Published: Feb 4, 2019
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
Coalition letter urging Congress to reauthorize the Pediatric Subspecialty Loan Repayment
Published: Feb 1, 2019
Tagged in: Advancing Rare Disease Research and Regulatory Science
NORD letter to Iowa in support of a strong newborn screening program
Published: Jan 30, 2019
Tagged in: Access to Diagnostics
Newborn Screening
Coalition comments regarding proposals from the Administration to change the six protected classes within Medicare Part D
Published: Jan 25, 2019
Tagged in: Access to Affordable, Adequate Coverage
Out of Pocket Prescription Drug Costs
MAPRx coalition comments regarding the Administration’s recent Medicare Part D proposals
Published: Jan 25, 2019
Tagged in: Access to Affordable, Adequate Coverage
Out of Pocket Prescription Drug Costs
NORD letter to Representative McGovern asking him to sponsor the Medical Nutrition Equity Act
Published: Jan 25, 2019
Tagged in: Access to Affordable, Adequate Coverage
Medical Nutrition
NORD comments to Wisconsin regarding cosponsorship of step therapy reform legislation (LRB-0350/1)
Published: Jan 24, 2019
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
Coalition comments to the President and Congress outlining the detrimental impact of the shutdown on FDA and asking for it to be brought back to its full capacity
Published: Jan 23, 2019
Tagged in: Access to Innovative Medicines and Therapies
Protecting FDA Standards for Safe and Effective Drugs
NORD comments to South Carolina regarding its Community Engagement Section 1115 waiver
Published: Jan 22, 2019
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
Coalition comments to CMS regarding Oklahoma’s Section 1115 waiver
Published: Jan 18, 2019
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD comments to the Food and Drug Administration (FDA) regarding a patient engagement in medical device clinical trials discussion document
Published: Jan 8, 2019
Tagged in: Access to Innovative Medicines and Therapies
Patient Focused Drug Development
Coalition comments to the Department of Health and Human Services (HHS) regarding parts of its proposed rule pertaining to marketplace integrity
Published: Jan 8, 2019
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
Coalition comments to the Centers for Medicare and Medicaid Services (CMS) regarding Virginia’s Section 1115 waiver
Published: Jan 4, 2019
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD comments to CMS regarding its International Price Index (IPI) Model proposal
Published: Dec 31, 2018
Tagged in: Access to Affordable Medicines
The Administration's Blueprint
Coalition comments to the Administration regarding its recently released guidance on Section 1332 waivers
Published: Dec 18, 2018
Tagged in: Access to Affordable, Adequate Coverage
Section 1332 Waivers
Coalition letter to the Administration and to all governors and insurance commissioners regarding recently proposed changes to Section 1332 waivers
Published: Dec 18, 2018
Tagged in: Access to Affordable, Adequate Coverage
Section 1332 Waivers
Coalition statement in response to a ruling in the Texas v. United States case regarding the Affordable Care Act (ACA)
Published: Dec 17, 2018
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
NORD comments to FDA regarding rare disease drug development and the role of pre-investigational new drug (IND) application meetings
Published: Dec 17, 2018
Tagged in: Access to Innovative Medicines and Therapies
Patient Focused Drug Development
NORD comments to FDA regarding patient-focused drug development
Published: Dec 16, 2018
Tagged in: Access to Innovative Medicines and Therapies
Patient Focused Drug Development
NORD comments to FDA regarding gene therapies for rare diseases
Published: Dec 14, 2018
Tagged in: Access to Innovative Medicines and Therapies
Gene Therapies
NORD comments in support of Ohio Senate Bill 56, legislation pertaining to step therapy protocol reform
Published: Dec 4, 2018
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
Coalition comments to Delaware’s Department of Insurance in support of a proposed rule that would place restrictions on short-term, limited-duration health plans.
Published: Dec 3, 2018
Tagged in: Access to Affordable, Adequate Coverage
Short-Term, Limited-Duration Health Plans and Association Health Plans
Coalition letter to the Senate in support of the MODERN Labeling Act (S.3519)
Published: Nov 15, 2018
Tagged in: Access to Innovative Medicines and Therapies
MODERN Labeling
Coalition letter to the Council of the District of Columbia in support of a bill that would place restrictions on short-term, limited-duration plans and association health plans
Published: Nov 9, 2018
Tagged in: Access to Affordable, Adequate Coverage
Short-Term, Limited-Duration Health Plans and Association Health Plans
Coalition letter urging Massachusetts to extend the authorization for copay cards
Published: Nov 7, 2018
Tagged in: Access to Affordable, Adequate Coverage
Out of Pocket Prescription Drug Costs
NORD letter in support of adding MPS I and Pompe to Indiana’s newborn screening panel
Published: Oct 26, 2018
Tagged in: Access to Diagnostics
Newborn Screening
Coalition comments to CMS regarding Michigan’s Section 1115 waiver
Published: Oct 26, 2018
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
Coalition statement encouraging CMS to withdrawn guidance allowing states to subsidize short-term, limited-duration plans starting in 2020
Published: Oct 24, 2018
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Coalition letter thanking Governor Wolf of Pennsylvania for vetoing HB2138
Published: Oct 22, 2018
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD comments to Virginia regarding its Section 1115 waiver
Published: Oct 20, 2018
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
Coalition comments to CMS regarding Alabama’s Section 1115 waiver
Published: Oct 17, 2018
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
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