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
Coalition letter regarding recent policy changes proposed by the administration
Published: Mar 19, 2018
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Updated NORD one-pager detailing our opposition to the Right to Try Act
Published: Mar 19, 2018
Tagged in: Access to Innovative Medicines and Therapies
Right to Try
Updated sign-on letter from over 100 patient and provider organizations in opposition to the Right to Try Act
Published: Mar 19, 2018
Tagged in: Access to Innovative Medicines and Therapies
Right to Try
Coalition statement calling on Congress to pass a market stabilization proposal
Published: Mar 13, 2018
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Sign-on letter from 82 patient organizations in opposition to the newest version of the Right to Try Act
Published: Mar 12, 2018
Tagged in: Access to Innovative Medicines and Therapies
Right to Try
Coalition comments on the Department of Labor’s proposed rule regarding Association Health Plans (AHPs)
Published: Mar 6, 2018
Tagged in: Access to Affordable, Adequate Coverage
Short-Term, Limited-Duration Health Plans and Association Health Plans
NORD letter in support of Connecticut Senate Bill 398, an act relating to the enforcement of Connecticut’s step therapy law
Published: Mar 6, 2018
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
Coalition comments to CMS regarding the Medicare prescription drug benefit and beneficiary access
Published: Mar 5, 2018
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
Coalition letter to Congress regarding medical research within the fiscal year 2019 National Defense Authorization Act
Published: Feb 27, 2018
Tagged in: Advancing Rare Disease Research and Regulatory Science
Coalition letter to Congress in support of the Medical Nutrition Equity Act (S.1194/H.R.2587)
Published: Feb 23, 2018
Tagged in: Access to Affordable, Adequate Coverage
Medical Nutrition
Coalition comments to CMS on Wisconsin’s Section 1115 BadgerCare demonstration waiver extension application
Published: Feb 22, 2018
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD comments to CMS on Wisconsin’s Section 1115 BadgerCare demonstration waiver extension application
Published: Feb 22, 2018
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
Coalition comments to CMS on Mississippi’s Section 1115 revised demonstration waiver application
Published: Feb 22, 2018
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD comments to CMS on Mississippi’s Section 1115 revised demonstration waiver application
Published: Feb 22, 2018
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
Coalition sign-on letter to Medicaid Directors on the importance of Medicaid formulary access for rare disease patients
Published: Feb 21, 2018
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
NORD comments in support of Missouri House Bill 2407
Published: Feb 20, 2018
Tagged in: Rare Disease Advisory Councils (RDACs)
Coalition statement in response to a proposed rule that would expand the use of “short-term limited duration” insurance plans
Published: Feb 20, 2018
Tagged in: Access to Affordable, Adequate Coverage
Short-Term, Limited-Duration Health Plans and Association Health Plans
NORD comments to FDA regarding the designation of pediatric subpopulations
Published: Feb 18, 2018
Tagged in: Access to Innovative Medicines and Therapies
Access to Pediatric Therapies
NORD comments to the Food and Drug Administration (FDA) regarding targeted therapies
Published: Feb 16, 2018
Tagged in: Access to Innovative Medicines and Therapies
Rare Disease Clinical Trials
Coalition letter to Secretary Azar regarding Idaho’s recent insurance bulletin
Published: Feb 13, 2018
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
NORD one-pager emphasizing our opposition to the Right to Try Act
Published: Feb 13, 2018
Tagged in: Access to Innovative Medicines and Therapies
Right to Try
NORD letter in support of Ohio Senate Bill 56, an act relating to step-therapy
Published: Feb 12, 2018
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
NORD comments in support of Kansas Senate Bill 304, an act relating to step- therapy
Published: Feb 12, 2018
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
NORD letter in support of Oregon House Bill 4156, an act relating to out-of-pocket costs
Published: Feb 6, 2018
Tagged in: Access to Affordable, Adequate Coverage
Out of Pocket Prescription Drug Costs
Coalition letter to Congress in opposition to the Right to Try Act
Published: Feb 6, 2018
Tagged in: Access to Innovative Medicines and Therapies
Right to Try
NORD comments to the Food and Drug Administration (FDA) regarding pediatric drug development guidance
Published: Feb 5, 2018
Tagged in: Access to Innovative Medicines and Therapies
Access to Pediatric Therapies
Coalition comments to CMS on Arizona’s Section 1115 demonstration waiver request
Published: Feb 5, 2018
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD comments to CMS on Arizona’s Section 1115 demonstration waiver request
Published: Feb 5, 2018
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
American Plasma Users (APLUS) coalition letter regarding the Patient Notification System (PNS)
Published: Feb 2, 2018
Tagged in: Access to Innovative Medicines and Therapies
Coalition letter to Congress regarding a desire for a hearing on ensuring patient safety and access in the midst of the Biologics Price Competition and Innovation Act (BPCIA)
Published: Jan 30, 2018
Tagged in: Access to Affordable Medicines
Biosimilars
Coalition comments to CMS on New Mexico’s Centennial Care 2.0 1115 Waiver Renewal Application
Published: Jan 30, 2018
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
Coalition comments to CMS on Kansas’ KanCare 2.0 Section 1115 Demonstration Renewal Application
Published: Jan 26, 2018
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD comments to the Centers for Medicare and Medicaid Services (CMS) on Kansas’ KanCare 2.0 Section 1115 Demonstration Renewal Application
Published: Jan 26, 2018
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
Coalition response to the Department of Health and Human Service’s (HHS) request for information (RFI) titled “Promoting Healthcare Choice and Competition Across the United States”
Published: Jan 25, 2018
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
NORD letter in support of South Dakota Senate Bill 75, an act calling for prescriber communication with regard to biosimilars
Published: Jan 18, 2018
Tagged in: Access to Affordable Medicines
Biosimilars
NORD comments to the Centers for Medicare and Medicaid Services (CMS) on Next Generation Sequencing (NGS)
Published: Jan 17, 2018
Tagged in: Access to Diagnostics
Genetic Testing
Coalition comments to the Centers for Medicare and Medicaid Services (CMS) on Next Generation Sequencing (NGS)
Published: Jan 17, 2018
Tagged in: Access to Diagnostics
Genetic Testing
NORD letter in support of adding SMA to Georgia’s newborn screening panel
Published: Jan 17, 2018
Tagged in: Access to Diagnostics
Newborn Screening
NORD letter to Pennsylvania’s Rare Disease Council regarding the state’s newborn screening panel
Published: Jan 17, 2018
Tagged in: Access to Diagnostics
Newborn Screening
Rare Disease Advisory Councils (RDACs)
Coalition letter to the Centers for Medicare and Medicaid Services (CMS) regarding direct and indirect remuneration (DIR)
Published: Jan 16, 2018
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 Medicare Part D
Published: Jan 16, 2018
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
Coalition statement in response to Congress repealing the ACA’s individual mandate within the Tax Cuts and Jobs Act
Published: Dec 20, 2017
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
NORD comments to the Massachusetts Senate Joint Committee on Financial Services regarding fail first legislation
Published: Dec 14, 2017
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
Coalition letter to tax reform conferees regarding the ACA’s individual mandate
Published: Dec 12, 2017
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Coalition letter to the conference committee in strong support of the medical expense deduction
Published: Dec 8, 2017
Tagged in: Advancing Rare Disease Research and Regulatory Science
Coalition letter urging Congress to protect funding for the Medicare State Health Insurance Assistance Program (SHIP) for FY18
Published: Dec 7, 2017
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
Coalition letter from over 160 patient organizations to the tax reform conference committee in strong support of the Orphan Drug Tax Credit
Published: Dec 7, 2017
Tagged in: Access to Innovative Medicines and Therapies
Orphan Drug Tax Credit
NORD letter of opposition regarding Arkansas Board of Pharmacy’s proposed rule
Published: Dec 1, 2017
Tagged in: Access to Affordable Medicines
Biosimilars
Coalition letter to the Senate in support of the Collins Amendment
Published: Nov 30, 2017
Tagged in: Access to Affordable, Adequate Coverage
Coalition statement regarding a Congressional Budget Office (CBO) score confirming that the Alexander-Murray bill is not a fix for repealing the individual mandate
Published: Nov 30, 2017
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act