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
Coalition letter thanking Congress for increasing funding for research
Published: Oct 16, 2018
Tagged in: Advancing Rare Disease Research and Regulatory Science
Ensuring Adequate Funding for NIH
Coalition letter asking Congress to reauthorize loan repayment for pediatric subspecialists
Published: Oct 9, 2018
Tagged in: Advancing Rare Disease Research and Regulatory Science
Coalition letter thanking Congress for funding the National Neurological Conditions Surveillance System
Published: Oct 2, 2018
Tagged in: Advancing Rare Disease Research and Regulatory Science
Coalition letter to Secretary Azar regarding the patient protections in H.R.2077 that ought to be incorporated when implementing step therapy in Medicare Advantage plans
Published: Oct 1, 2018
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
Coalition statement regarding Maine’s SPA to expand Medicaid
Published: Oct 1, 2018
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
Coalition letter asking Secretary Azar and Administrator Verma to approve Maine’s State Plan Amendment (SPA) to expand Medicaid
Published: Oct 1, 2018
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
Coalition letter to Secretary Azar regarding the recent decision to allow step therapy in Medicare Advantage plans
Published: Sep 26, 2018
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
Coalition comments to South Dakota regarding its Section 1115 waiver
Published: Sep 26, 2018
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD comments to FDA regarding its definition of low-prevalence in a recent draft guidance
Published: Sep 25, 2018
Tagged in: Access to Affordable Medicines
Access to Innovative Medicines and Therapies
Orphan Drug Act
NORD comments to FDA regarding innovation and competition in the biological products marketplace
Published: Sep 21, 2018
Tagged in: Access to Affordable Medicines
Biosimilars
Coalition letter to the Senate regarding its recent bill on pre-existing conditions protections
Published: Sep 19, 2018
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Coalition letter asking Congress to continue supporting the medical expense deduction
Published: Sep 5, 2018
Tagged in: Advancing Rare Disease Research and Regulatory Science
Coalition statement addressing the Senate’s recent bill on pre-existing conditions protections
Published: Sep 4, 2018
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
NORD comments on Oklahoma’s Section 1115 waiver
Published: Aug 31, 2018
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
Coalition comments to CMS regarding New Hampshire’s Section 1115 waiver
Published: Aug 31, 2018
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD comments on Alabama’s revised Section 1115 waiver
Published: Aug 30, 2018
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
Coalition letter asking Congress to refrain from funding agriculture association health plans (AHPs)
Published: Aug 22, 2018
Tagged in: Access to Affordable, Adequate Coverage
Short-Term, Limited-Duration Health Plans and Association Health Plans
NORD comments on Kentucky’s Section 1115 waiver
Published: Aug 17, 2018
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
Coalition comments to CMS regarding Mississippi’s Section 1115 waiver
Published: Aug 17, 2018
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD comments to FDA regarding its Humanitarian Device Exemption (HDE) program
Published: Aug 14, 2018
Tagged in: Access to Innovative Medicines and Therapies
Devices for Small Populations
Coalition comments to CMS regarding New Jersey’s Section 1332 waiver
Published: Aug 9, 2018
Tagged in: Access to Affordable, Adequate Coverage
Section 1332 Waivers
Coalition comments to CMS regarding Maryland’s Section 1332 waiver
Published: Aug 3, 2018
Tagged in: Access to Affordable, Adequate Coverage
Section 1332 Waivers
Coalition statement expressing serious concerns with the Administration’s decision to expand the use of “short-term, limited-duration insurance plans
Published: Aug 1, 2018
Tagged in: Access to Affordable, Adequate Coverage
Short-Term, Limited-Duration Health Plans and Association Health Plans
Coalition letter to CMS regarding the recent court ruling on Kentucky’s work requirement in Medicaid
Published: Jul 24, 2018
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
Coalition letter to insurance commissioners across the nation expressing concerns with copay accumulators
Published: Jul 18, 2018
Tagged in: Access to Affordable, Adequate Coverage
Copay Assistance
NORD comments to the Administration on its “Blueprint to Lower Drug Prices and Reduce Out-of-Pocket Costs”
Published: Jul 17, 2018
Tagged in: Access to Affordable Medicines
The Administration's Blueprint
Coalition letter requesting Michigan to release additional data regarding its recently updated Section 1115 waiver
Published: Jul 16, 2018
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
Coalition statement urging the Administration to resume paying the risk adjustment payments for 2017
Published: Jul 11, 2018
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Alliance for a Stronger FDA letter to Congress regarding FDA appropriations
Published: Jul 10, 2018
Tagged in: Access to Innovative Medicines and Therapies
Appropriations
Protecting FDA Standards for Safe and Effective Drugs
Coalition comments to CMS regarding Maine’s Section 1332 waiver
Published: Jul 6, 2018
Tagged in: Access to Affordable, Adequate Coverage
Section 1332 Waivers
NORD comments to New Hampshire regarding its Section 1115 waiver
Published: Jun 27, 2018
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD comments regarding Managed Care Organizations in Texas’ Medicaid program
Published: Jun 26, 2018
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
Coalition comments to Washington regarding its short-term limited-duration medical plan rulemaking stakeholder draft
Published: Jun 26, 2018
Tagged in: Access to Affordable, Adequate Coverage
Short-Term, Limited-Duration Health Plans and Association Health Plans
NORD comments to CMS regarding the inpatient prospective payment system (IPPS) proposed rule
Published: Jun 25, 2018
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
NORD comments regarding funding for newborn screening in Texas’ Legislative Appropriations Request
Published: Jun 21, 2018
Tagged in: Access to Diagnostics
Appropriations
Newborn Screening
Coalition letter in support of copay assistance in Massachusetts
Published: Jun 20, 2018
Tagged in: Access to Affordable, Adequate Coverage
Out of Pocket Prescription Drug Costs
Coalition statement regarding the expansion of Association Health Plans (AHPs)
Published: Jun 19, 2018
Tagged in: Access to Affordable, Adequate Coverage
Short-Term, Limited-Duration Health Plans and Association Health Plans
Coalition letter in opposition to legislation in Pennsylvania that would seek to implement work requirements in Medicaid
Published: Jun 19, 2018
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD comments in opposition to Rhode Island Senate Bill 2532, a bill pertaining to copay accumulators
Published: Jun 16, 2018
Tagged in: Access to Affordable, Adequate Coverage
Copay Assistance
Coalition comments to CMS regarding Ohio’s Section 1115 waiver
Published: Jun 14, 2018
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
Sign-on letter from patient organizations in support of Michigan House Bill 5983, an act to establish a Rare Disease Advisory Council.
Published: Jun 14, 2018
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD letter of support for New Jersey Assembly Bill 2431, bipartisan legislation to limit out-of-pocket prescription costs
Published: Jun 8, 2018
Tagged in: Access to Affordable, Adequate Coverage
Out of Pocket Prescription Drug Costs
Coalition comments regarding Wisconsin’s Section 1332 waiver
Published: Jun 8, 2018
Tagged in: Access to Affordable, Adequate Coverage
Section 1332 Waivers
NORD comments to the American Medical Association expressing concerns with their resolution proposing reforms to the ODA
Published: Jun 1, 2018
Tagged in: Access to Innovative Medicines and Therapies
Orphan Drug Act
NORD letter in support of New Hampshire House Bill 1791, an act calling for prescriber communication with regard to biosimilars
Published: May 23, 2018
Tagged in: Access to Affordable Medicines
Biosimilars
NORD letter in support of Ohio Senate Bill 56, an act pertaining to step therapy protections
Published: May 21, 2018
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
NORD comparison of two versions of the Right to Try Act
Published: May 21, 2018
Tagged in: Access to Innovative Medicines and Therapies
Right to Try
Coalition letter in opposition to the Right to Try Act (S.204)
Published: May 21, 2018
Tagged in: Access to Innovative Medicines and Therapies
Right to Try
NORD comments to FDA regarding the development and submission of proposed draft guidance relating to patient experience data
Published: May 18, 2018
Tagged in: Access to Innovative Medicines and Therapies
Patient Focused Drug Development
Coalition letter urging CMS to rescind invitation to states to include work requirement policies in their 1115 demonstration waiver applications
Published: May 14, 2018
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
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