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 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
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