NORD Comments on CMS IFR on Community Engagement (Work) Requirements
Published: Jul 29, 2026
NORD on the Issues
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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
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
Coalition comments on Health and Human Services (HHS) Notice of Benefit and Payment Parameters for 2019
Published: Nov 27, 2017
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
Coalition statement in opposition to the House of Representatives’ vote to repeal the Orphan Drug Tax Credit
Published: Nov 20, 2017
Tagged in: Access to Innovative Medicines and Therapies
Orphan Drug Tax Credit
NORD letter to IL Department of Healthcare and Family Services regarding Medicaid DUR for nusinersen and other orphan drugs
Published: Nov 15, 2017
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
Coalition statement urging Congress to not include a repeal of the individual mandate within tax reform
Published: Nov 14, 2017
Coalition statement by 36 patient organizations in opposition to the Senate’s proposed weakening of the Orphan Drug Tax Credit
Published: Nov 14, 2017
Tagged in: Access to Innovative Medicines and Therapies
Orphan Drug Tax Credit
Coalition letter from over 200 patient organizations imploring Congress to maintain the Orphan Drug Tax Credit **Updated letter as of November 10**
Published: Nov 8, 2017
Tagged in: Access to Innovative Medicines and Therapies
Orphan Drug Tax Credit
Coalition letter in support of the proposed substitute for Michigan House Bill No. 4472
Published: Oct 31, 2017
Tagged in: Access to Affordable Medicines
Biosimilars
Coalition statement urging Congress to act on the Bipartisan Health Care Stabilization Act of 2017 in light of the Congressional Budget Office (CBO) report
Published: Oct 26, 2017
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
NORD comments to the Centers for Medicare & Medicaid Services (CMS) regarding the MassHealth Section 1115 Demonstration Amendment Request
Published: Oct 20, 2017
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
Coalition statement in support of the HELP bipartisan stabilization deal
Published: Oct 18, 2017
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Coalition letter to the Centers for Medicare & Medicaid Services (CMS) regarding the MassHealth Section 1115 Demonstration Amendment Request
Published: Oct 18, 2017
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
Coalition letter to Congress in support of the Ensuring Children’s Access to Specialty Care Act of 2017
Published: Oct 12, 2017
Tagged in: Advancing Rare Disease Research and Regulatory Science
Coalition letter urging Congress to include support for loan repayment for pediatric subspecialists as part of the effort to reauthorize the Title VII health professions workforce programs
Published: Oct 12, 2017
Tagged in: Advancing Rare Disease Research and Regulatory Science
Coalition letter urging the House to adopt the Senate Appropriations Committee’s funding levels for outreach and enrollment in marketplace coverage under the Affordable Care Act
Published: Oct 12, 2017
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Appropriations
Coalition statement regarding President Trump’s executive order released today
Published: Oct 12, 2017
Tagged in: Access to Affordable, Adequate Coverage
Short-Term, Limited-Duration Health Plans and Association Health Plans
Coalition letter urging Congress to reject any proposal to increase Medicare Part D copayments for beneficiaries receiving the low-income subsidy (LIS)
Published: Sep 29, 2017
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
NORD comments to the Institute for Clinical and Economic Review (ICER) on a proposed adaptation to its value framework for the assessment of treatments for ultra-rare conditions
Published: Sep 25, 2017
Tagged in: Access to Affordable Medicines
Value-based Pricing Assessments
Coalition statement regarding the Senate Finance Committee Hearing to Consider the Graham-Cassidy-Heller-Johnson Proposal
Published: Sep 22, 2017
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Coalition letter to the House Energy and Commerce Committee in opposition to S.204, the Trickett Wendler, Frank Mongiello, Jordan McLinn, and Matthew Bellina Right to Try Act of 2017, and H.R. 878, the Right to Try Act of 2017
Published: Sep 19, 2017
Tagged in: Access to Innovative Medicines and Therapies
Right to Try
Coalition statement in opposition of Graham/Cassidy Bill
Published: Sep 18, 2017
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Sign-on letter from 140 patient organizations urging Congress to keep the Orphan Drug Tax Credit in place
Published: Sep 14, 2017
Tagged in: Access to Innovative Medicines and Therapies
Orphan Drug Tax Credit
NORD comments to the Centers for Medicare & Medicaid Services (CMS) regarding the “14-Day Rule”
Published: Sep 11, 2017
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
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