NORD Comments on CMS IFR on Community Engagement (Work) Requirements
Published: Jul 29, 2026
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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 Comments on CMS IFR on Community Engagement (Work) Requirements
Published: Jul 29, 2026
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
MAPRx coalition letter urging Congress to take action to reverse an unintended dramatic increase in Medicare Part D out-of-pocket costs that is set to occur in 2020
Published: Jan 13, 2020
Tagged in: Access to Affordable, Adequate Coverage
Out of Pocket Prescription Drug Costs
Coalition letter in support of the Ensuring Lasting Smiles Act (H.R.1379)
Published: Jan 3, 2020
Tagged in: Access to Affordable, Adequate Coverage
Ensuring Lasting Smiles
Coalition statement in support of a petition urging the Supreme Court to expedite review of the Texas v. US ruling
Published: Jan 3, 2020
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
NORD comments to FDA regarding patient-focused drug development and determining what is important to patients
Published: Dec 30, 2019
NORD comments to CMS regarding drugs that ought to eligible for the recently enacted home infusion benefit
Published: Dec 29, 2019
Tagged in: Access to Affordable, Adequate Coverage
Medicare Home Infusion
Coalition letter urging Secretary Azar to ensure that the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) can continue its work
Published: Dec 19, 2019
Tagged in: Access to Diagnostics
Newborn Screening
Coalition statement regarding the Texas v US Appellate Ruling
Published: Dec 19, 2019
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Coalition comments in strong opposition to Tennessee’s Section 1115 waiver
Published: Dec 18, 2019
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD comments to Pennsylvania regarding its Section 1332 waiver
Published: Dec 13, 2019
Tagged in: Access to Affordable, Adequate Coverage
Section 1332 Waivers
Coalition letter to the White House urging action on surprise medical billing
Published: Dec 13, 2019
Tagged in: Access to Affordable, Adequate Coverage
Surprise Medical Billing
Coalition letter to Congress urging action on surprise medical billing
Published: Dec 13, 2019
Tagged in: Access to Affordable, Adequate Coverage
Surprise Medical Billing
Coalition statement voicing strong opposition to CMS’ decision to allow a state that has not expanded Medicaid, South Carolina, to implement a work requirement
Published: Dec 12, 2019
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
Coalition statement in support of moving forward with a bipartisan, bicameral deal on surprise medical billing
Published: Dec 11, 2019
Tagged in: Access to Affordable, Adequate Coverage
Surprise Medical Billing
NORD letter to Congress in support of an expedient solution to surprise medical billing
Published: Dec 10, 2019
Tagged in: Access to Affordable, Adequate Coverage
Surprise Medical Billing
Coalition comments to CMS in opposition to Utah’s Section 1115 waiver
Published: Dec 6, 2019
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD comments to Indiana regarding its Section 1115 waiver
Published: Dec 6, 2019
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD comments to Georgia regarding its Section 1332 wavier to create a reinsurance program
Published: Dec 3, 2019
Tagged in: Access to Affordable, Adequate Coverage
Section 1332 Waivers
NORD comments to Georgia regarding its Section 1332 wavier
Published: Dec 3, 2019
Tagged in: Access to Affordable, Adequate Coverage
Section 1332 Waivers
NORD comments to Georgia regarding its Section 1115 waiver
Published: Dec 3, 2019
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD sign-on letter from over 30 rare disease organizations in support of Dr. Stephen Hahn, the nominee for FDA Commissioner
Published: Dec 2, 2019
Tagged in: Access to Innovative Medicines and Therapies
Protecting FDA Standards for Safe and Effective Drugs
NORD comments to Nebraska regarding its Section 1115 waiver
Published: Nov 25, 2019
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD statement at FDA Pediatric Stakeholder Meeting
Published: Nov 21, 2019
Tagged in: Access to Innovative Medicines and Therapies
Access to Pediatric Therapies
Coalition comments to CMS in opposition to Idaho’s Section 1115 waiver
Published: Nov 1, 2019
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
Coalition statement in support of S.J.Res.52, a resolution to reverse the recent harmful 1332 guidance
Published: Oct 30, 2019
Tagged in: Access to Affordable, Adequate Coverage
Section 1332 Waivers
NORD comments to Utah regarding its Section 1115 waiver
Published: Oct 25, 2019
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD comments to Tennessee regarding its Section 1115 waiver
Published: Oct 18, 2019
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
Federal
Published: Oct 18, 2019
Tagged in: Access to Affordable Medicines
Value-based Pricing Assessments
NORD letter to Massachusetts in support of H.1853/S.1235, legislation to reform step therapy practices
Published: Oct 8, 2019
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
NORD letter to Massachusetts in support of H. 1934, legislation to create a rare disease advisory council
Published: Oct 8, 2019
Tagged in: Rare Disease Advisory Councils (RDACs)
Coalition letter to Congress urging action to stop surprise medical billing
Published: Oct 2, 2019
Tagged in: Access to Affordable, Adequate Coverage
Surprise Medical Billing
NORD sign-on letter from over 40 rare disease patient organizations asking Congress to protect immigrants with rare diseases after having participated in clinical trials
Published: Sep 24, 2019
Tagged in: Advancing Rare Disease Research and Regulatory Science
Immigration
NORD letter to Idaho in opposition to its Section 1115 waiver
Published: Sep 20, 2019
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD letter to Massachusetts regarding copay assistance
Published: Sep 20, 2019
Tagged in: Access to Affordable, Adequate Coverage
Copay Assistance
NORD letter urging United States Citizenship and Immigration Services (USCIS) to reverse a recent decision on deferred action that is having a negative impact on immigrants with rare diseases
Published: Sep 17, 2019
Tagged in: Advancing Rare Disease Research and Regulatory Science
Immigration
Coalition comments to CMS in opposition to its proposal to revoke a rule that helps ensure access in Medicaid
Published: Sep 13, 2019
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
Coalition statement expressing concern about the Administration’s recent action on medical deferred action
Published: Sep 11, 2019
Tagged in: Advancing Rare Disease Research and Regulatory Science
Immigration
NORD statement to the House Committee on Oversight and Reform regarding the recent United States Citizenship and Immigration Services’ (USCIS) recent actions on deferred action affecting immigrants with rare diseases
Published: Sep 10, 2019
Tagged in: Advancing Rare Disease Research and Regulatory Science
Immigration
Coalition comments to CMS in opposition to Indiana’s Section 1115 waiver
Published: Sep 6, 2019
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
Coalition principles regarding the uptake of biosimilars
Published: Sep 1, 2019
Tagged in: Access to Affordable Medicines
Biosimilars
NORD comments to Montana to extend and amend its Health and Economic Livelihood (HELP) Demonstration Program
Published: Aug 20, 2019
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
Coalition comments to CMS in support of Delaware’s Section 1332 wavier
Published: Aug 16, 2019
Tagged in: Access to Affordable, Adequate Coverage
Section 1332 Waivers
NORD letter to Pennsylvania in support of Senate Bill 731, an act pertaining to copay assistance
Published: Aug 15, 2019
Tagged in: Access to Affordable, Adequate Coverage
Copay Assistance
Coalition comments to CMS in support of Rhode Island’s Section 1332 waiver
Published: Aug 14, 2019
Tagged in: Access to Affordable, Adequate Coverage
Section 1332 Waivers
Coalition letter to HHS in opposition to changes to Section 1557 of the ACA
Published: Aug 13, 2019
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Coalition comments to CMS in support of New Mexico’s Section 1115 waiver
Published: Aug 7, 2019
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD comments to FDA regarding clinical trial eligibility
Published: Aug 6, 2019
Tagged in: Access to Innovative Medicines and Therapies
Rare Disease Clinical Trials
Coalition comments to CMS in opposition to Iowa’s Section 1115 waiver
Published: Aug 2, 2019
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
Coalition letter to the Senate in support of S.J.Res.52, legislation to reverse CMS’ most recent Section 1332 guidance
Published: Jul 31, 2019
Tagged in: Access to Affordable, Adequate Coverage
Section 1332 Waivers
Coalition comments to CMS in support of Montana’s Section 1332 waiver
Published: Jul 30, 2019
Tagged in: Access to Affordable, Adequate Coverage
Section 1332 Waivers
MAPRx letter to the Senate Committee on Finance regarding its drug pricing legislative package
Published: Jul 25, 2019
Tagged in: Access to Affordable Medicines
Federal Drug Pricing Legislation in the 116th Congress
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