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 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
Coalition letter to Congress requesting continued support for the defense health research programs funded through the Congressionally Directed Medical Research Programs (CDMRP) at the Department of Defense (DOD)
Published: May 8, 2018
Tagged in: Advancing Rare Disease Research and Regulatory Science
I Am Essential coalition comments to the Administration in opposition to its proposed rule regarding short-term, limited-duration plans (STLDs)
Published: Apr 23, 2018
Tagged in: Access to Affordable, Adequate Coverage
Short-Term, Limited-Duration Health Plans and Association Health Plans
Coalition comments to the Administration in opposition to its proposed rule regarding short-term, limited-duration plans (STLDs)
Published: Apr 23, 2018
Tagged in: Access to Affordable, Adequate Coverage
Short-Term, Limited-Duration Health Plans and Association Health Plans
Coalition letter to the Administration in opposition to its proposed rule regarding short-term, limited-duration plans (STLDs)
Published: Apr 23, 2018
Tagged in: Access to Affordable, Adequate Coverage
Short-Term, Limited-Duration Health Plans and Association Health Plans
Sign-on letter from over 100 rare disease patient organizations in support of the RARE Act of 2018
Published: Apr 18, 2018
Tagged in: Advancing Rare Disease Research and Regulatory Science
RARE Act
NORD letter in support of Connecticut House Bill 5297, an act requiring continuing medical education in screening for rare gastrointestinal cancers
Published: Apr 18, 2018
Tagged in: Advancing Rare Disease Research and Regulatory Science
Coalition letter asking Congress to voice opposition to the proposed rule regarding short-term, limited-duration plans (STLDs)
Published: Apr 17, 2018
Tagged in: Access to Affordable, Adequate Coverage
Short-Term, Limited-Duration Health Plans and Association Health Plans
Coalition statement expressing concerns with the 2019 Notice of Benefit and Payment Parameters final rule
Published: Apr 12, 2018
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
Coalition letter in opposition to Michigan Senate Bill 897, a bill requiring the state to implement a work requirement in its Medicaid program
Published: Apr 11, 2018
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
Coalition letter to Secretary Azar regarding Medicare Part D’s protected classes policy
Published: Apr 9, 2018
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
Coalition comments regarding Colorado’s proposed permanent rule on cost-sharing
Published: Apr 4, 2018
Tagged in: Access to Affordable, Adequate Coverage
Out of Pocket Prescription Drug Costs
Coalition letter asking Governors to voice opposition to the proposed rule regarding short-term, limited-duration plans (STLDs)
Published: Apr 3, 2018
Tagged in: Access to Affordable, Adequate Coverage
Short-Term, Limited-Duration Health Plans and Association Health Plans
NORD comments to the Alabama Medicaid Agency on its Section 1115 Demonstration Application
Published: Apr 2, 2018
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
Coalition letter asking Congress to appropriate funds for the Pediatric Device Consortia (PDC) Grant Program
Published: Mar 27, 2018
Tagged in: Access to Innovative Medicines and Therapies
Devices for Small Populations
NORD letter in support of West Virginia House Bill 4524, an act calling for prescriber communication with regard to biosimilars
Published: Mar 26, 2018
Tagged in: Access to Affordable Medicines
Biosimilars
Coalition statement regarding Congress’ failure to include a market stabilization package in the spending deal
Published: Mar 26, 2018
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Coalition letter in opposition of Rhode Island Senate Bill 2532, an act that would prevent copay assistance from being applied to out-of-pocket expenses
Published: Mar 26, 2018
Tagged in: Access to Affordable, Adequate Coverage
Out of Pocket Prescription Drug Costs
Sign-on letter to the Senate from 106 patient and provider organizations in opposition to the Right to Try Act
Published: Mar 22, 2018
Tagged in: Access to Innovative Medicines and Therapies
Right to Try
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
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