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 comments to FDA regarding natural history data registries
Published: May 24, 2019
Tagged in: Access to Innovative Medicines and Therapies
Patient Focused Drug Development
NORD letter to Congress in support of provisions in the new H.R.987, legislation that aims to lower drug costs and improve the Affordable Care Act (ACA)
Published: May 15, 2019
Tagged in: Access to Affordable Medicines
Federal Drug Pricing Legislation in the 116th Congress
Coalition letter to Congress in support of H.R.1010, legislation to prevent the implementation of the 2018 short-term, limited-duration health plan guidance
Published: May 15, 2019
Tagged in: Access to Affordable, Adequate Coverage
Short-Term, Limited-Duration Health Plans and Association Health Plans
Coalition letter to Congress in support of the original H.R.987, legislation to enhance outreach and enrollment activities
Published: May 15, 2019
Tagged in: Access to Affordable Medicines
Federal Drug Pricing Legislation in the 116th Congress
Coalition letter to Congress in support of H.R.1386, legislation to improve the navigator program
Published: May 15, 2019
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Coalition letter asking Congress to reauthorize the Patient-Centered Outcomes Research Institute
Published: May 13, 2019
Tagged in: Advancing Rare Disease Research and Regulatory Science
PCORI
NORD letter to Illinois in support of HB 2174, legislation to alleviate patient out-of-pocket drug costs
Published: May 13, 2019
Tagged in: Access to Affordable, Adequate Coverage
Out of Pocket Prescription Drug Costs
Coalition letter in support of H.R.986, legislation to reverse harmful Section 1332 guidance
Published: May 8, 2019
Tagged in: Access to Affordable, Adequate Coverage
Section 1332 Waivers
Coalition letter to Congress introducing ourselves and our mission
Published: May 8, 2019
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Coalition response to a request for information (RFI) on allowing the sale of insurance across state lines
Published: May 6, 2019
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
Coalition letter to Tennessee Governor Bill Lee in opposition implementing a block grant to fund Medicaid
Published: Apr 29, 2019
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
Coalition letter to the Administration regarding the potential of a recent memo to hamper FDA
Published: Apr 26, 2019
Tagged in: Access to Innovative Medicines and Therapies
Protecting FDA Standards for Safe and Effective Drugs
Coalition one-pager regarding step therapy reform legislation legislation in Pennsylvania
Published: Apr 24, 2019
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
Coalition letter to Congress regarding appropriations for the Pediatric Device Consortia (PDC) Grant Program
Published: Apr 18, 2019
Tagged in: Access to Innovative Medicines and Therapies
Access to Pediatric Therapies
Appropriations
Coalition letter to Delaware in support of HB 105, step therapy reform legislation
Published: Apr 15, 2019
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
NORD letter to Wisconsin in support of AB 24/SB 26, step therapy reform legislation
Published: Apr 12, 2019
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
Coalition statement in support of H.R.1010, legislation that would nullify the recently revised rule on short-term, limited-duration health plans (STLDHP)
Published: Apr 8, 2019
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
NORD comments to HHS regarding its Proposed Rule on rebates in Medicare Part D and Medicaid managed care
Published: Apr 8, 2019
Tagged in: Access to Affordable, Adequate Coverage
Out of Pocket Prescription Drug Costs
NORD letter to New York in support of A 5762, legislation to create a rare disease advisory council
Published: Apr 4, 2019
Tagged in: Rare Disease Advisory Councils (RDACs)
Coalition letter to Congress asking for funding for the Emergency Medical Services for Children (EMSC) program
Published: Apr 3, 2019
Tagged in: Access to Affordable, Adequate Coverage
Emergency Medical Services
NORD comments to South Carolina regarding its revised Section 1115 waiver
Published: Apr 2, 2019
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
Coalition letter to Tennessee in opposition to implementing a block grant to fund Medicaid
Published: Apr 2, 2019
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD comments to FDA on common issues in rare disease drug development
Published: Apr 2, 2019
Tagged in: Access to Innovative Medicines and Therapies
Patient Focused Drug Development
NORD letter to the House of Representatives in support of the CREATES Act (H.R.965)
Published: Apr 2, 2019
Tagged in: Access to Affordable Medicines
Generic Drugs
Coalition statement lauding federal court decisions to stop the expansion of association health plans and Arkansas’ and Kentucky’s Medicaid work requirements
Published: Mar 29, 2019
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
Short-Term, Limited-Duration Health Plans and Association Health Plans
Coalition statement expressing disappointment at CMS’ approval of Utah’s Section 1115 waiver
Published: Mar 29, 2019
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
Coalition comments in response to a request for information on grandfathered plans
Published: Mar 27, 2019
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Coalition statement regarding actions taken by the Administration and the House of Representatives pertaining to the Affordable Care Act (ACA)
Published: Mar 26, 2019
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
NORD comments to FDA regarding submitting guidance on Patient Experience Data (PED)
Published: Mar 21, 2019
Tagged in: Access to Innovative Medicines and Therapies
Patient Focused Drug Development
NORD letter to Washington in support of House Bill 1879, legislation pertaining to utilization management reform
Published: Mar 20, 2019
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
NORD letter to Illinois in support of House Bill 2174, legislation seeking to lower out-of-pocket drug costs
Published: Mar 19, 2019
Tagged in: Access to Affordable, Adequate Coverage
Out of Pocket Prescription Drug Costs
NORD letter to West Virginia Governor Jim Justice in support of House Bill 2770
Published: Mar 15, 2019
Tagged in: Access to Affordable, Adequate Coverage
Out of Pocket Prescription Drug Costs
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