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 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
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