NORD Comments on CMS IFR on Community Engagement (Work) Requirements
Published: Jul 29, 2026
NORD on the Issues
Learn more about NORD's position on key issues that matter to you.
Learn More
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
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
NORD comments to the Centers for Medicare & Medicaid Services (CMS) regarding biosimilars
Published: Sep 11, 2017
Tagged in: Access to Affordable Medicines
Biosimilars
Coalition letter urging Secretary Price to retain the six protected classes under Medicare Part D
Published: Sep 8, 2017
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
NORD letter voicing concerns over California Assembly Bill 265
Published: Aug 30, 2017
Tagged in: Access to Affordable, Adequate Coverage
Copay Assistance
NORD comments on the Massachusetts Executive Office of Health and Human Services’ (EOHHS) proposed Amendment to the MassHealth Section 1115 Demonstration
Published: Aug 21, 2017
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD letter to Congress outlining short-term and long-term stabilization and improvement proposals for the Affordable Care Act (ACA)
Published: Aug 16, 2017
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Coalition letter urging the House to restore Medicare State Health Insurance Assistance Program (SHIP) funding to FY16 levels
Published: Jul 18, 2017
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
Coalition comments in response to Health and Human Services (HHS)’s Request for Information (RFI) on ways to reduce regulatory burdens and improve health care choices to empower patients
Published: Jul 12, 2017
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Coalition letter urging Congress to negotiate a bipartisan budget deal that raises the sequestration caps
Published: Jul 11, 2017
Tagged in: Advancing Rare Disease Research and Regulatory Science
Ensuring Adequate Funding for NIH
Coalition letter opposing proposed budget cuts to newborn screening programs
Published: Jul 6, 2017
Tagged in: Access to Diagnostics
Newborn Screening
Coalition letter urging Senate leadership to protect Medicaid
Published: Jun 15, 2017
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Coalition letter urging Congress to reauthorize the Children’s Health Insurance Program (CHIP)
Published: Jun 12, 2017
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
Coalition comments to FDA on the creation of an Office of Patient Affairs
Published: Jun 12, 2017
Tagged in: Access to Innovative Medicines and Therapies
Patient Focused Drug Development
NORD letter in support of the Medical Nutrition Equity Act of 2017
Published: Jun 9, 2017
Tagged in: Access to Affordable, Adequate Coverage
Medical Nutrition
Coalition letter in support of New York S.4788/A.7509, acts regarding the substitution of interchangeable biological products
Published: Jun 1, 2017
Tagged in: Access to Affordable Medicines
Biosimilars
Zika Coalition letter to the House Committee on Energy and Commerce
Published: May 23, 2017
Tagged in: Advancing Rare Disease Research and Regulatory Science
Oregon coalition letter regarding out-of-pocket costs
Published: May 17, 2017
Tagged in: Access to Affordable, Adequate Coverage
Out of Pocket Prescription Drug Costs
NORD letter in support of the Enhancing Clinical Trial Design Act
Published: May 9, 2017
Tagged in: Access to Innovative Medicines and Therapies
Rare Disease Clinical Trials
Sign-on letter from 120 patient organizations urging Congress to reauthorize FDA User Fee Agreements
Published: May 8, 2017
Tagged in: Access to Innovative Medicines and Therapies
Protecting FDA Standards for Safe and Effective Drugs
Coalition principles for access to unapproved therapies
Published: May 2, 2017
Tagged in: Access to Innovative Medicines and Therapies
Expanded Access
NORD comments on FDA Reauthorization Act of 2017 discussion draft
Published: Apr 28, 2017
Tagged in: Access to Innovative Medicines and Therapies
Protecting FDA Standards for Safe and Effective Drugs
NORD letter in support of the Rare Disease Expert Provision in Iowa House File 653
Published: Apr 28, 2017
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
MAPRx Coalition letter to the Centers for Medicare & Medicaid Services (CMS)
Published: Apr 24, 2017
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
Coalition comments on manufacturer communications regarding unapproved uses of approved or cleared medical products
Published: Apr 19, 2017
Tagged in: Access to Innovative Medicines and Therapies
MODERN Labeling
Coalition letter urging Congress to provide funding for newborn screening in FY 2018 appropriations
Published: Apr 4, 2017
Tagged in: Access to Diagnostics
Appropriations
Newborn Screening
NORD comments on proposed changes to ICER’s value framework
Published: Apr 3, 2017
Tagged in: Access to Affordable Medicines
Value-based Pricing Assessments
NORD comments on ICER’s Patient Participation Guide
Published: Apr 3, 2017
Tagged in: Access to Affordable Medicines
Value-based Pricing Assessments
NORD letter in support of California Senate Bill 643, a bill to add Duchenne muscular dystrophy to the list of medical conditions eligible for the Genetically Handicapped Persons Program
Published: Mar 28, 2017
Tagged in: Access to Affordable, Adequate Coverage
SSI/SSDI
NORD letter in support of Iowa House File 233, an act regarding step therapy protocols
Published: Mar 28, 2017
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
Coalition letter urging Congress to include funding to combat Zika in Fiscal Year 2018 appropriations
Published: Mar 27, 2017
Tagged in: Advancing Rare Disease Research and Regulatory Science
Appropriations
NORD letter in support of Florida House Bill 963, an act regarding newborn screening
Published: Mar 21, 2017
Tagged in: Access to Diagnostics
Newborn Screening
Coalition letter to Congress expressing concern over proposed changes to Medicaid
Published: Mar 20, 2017
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
NORD letter in support of Nevada Assembly Bill 245, an act calling for prescriber communication with regard to biosimilars
Published: Mar 20, 2017
Tagged in: Access to Affordable Medicines
Biosimilars
NORD letter in support of Oregon Senate Bill 237, an act regarding cost sharing
Published: Mar 16, 2017
Tagged in: Access to Affordable, Adequate Coverage
Out of Pocket Prescription Drug Costs
NORD letter in support of Kansas House Bill 2107, an act calling for prescriber communication with regard to biosimilars
Published: Mar 16, 2017
Tagged in: Access to Affordable Medicines
Biosimilars
American Plasma Users Coalition (APLUS) letter to Congress regarding patient protections
Published: Mar 7, 2017
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Coalition for Accessible Treatments (CAT) letter to Congress regarding ACA Cost Sharing
Published: Mar 7, 2017
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Coalition healthcare reform principles
Published: Mar 6, 2017
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Coalition letter in support of CT HB 7118, an act calling for prescriber communication with regard to biosimilars
Published: Mar 1, 2017
Tagged in: Access to Affordable Medicines
Biosimilars
Coalition letter to President Trump regarding rare diseases and the hiring freeze
Published: Feb 27, 2017
Tagged in: Advancing Rare Disease Research and Regulatory Science
NORD Principles for Health Coverage Reform
Published: Feb 23, 2017
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
NORD State Ambassador testimony before the Connecticut General Assembly’s Public Health Committee supporting HB 6009, an act to establish a Rare Disease Advisory Council
Published: Feb 22, 2017
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD letter in support of New Mexico Senate Bill 180 and House Bill 260, acts calling for prescriber communication with regard to biosimilars
Published: Feb 17, 2017
Tagged in: Access to Affordable Medicines
Biosimilars
NORD letter in support of Alabama House Bill 82, an act calling for prescriber communication with regard to biosimilars
Published: Feb 15, 2017
Tagged in: Access to Affordable Medicines
Biosimilars
Please complete this form to access the requested resource.
