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
Coalition statement urging the Administration to create a special enrollment period for the healthcare.gov marketplace
Published: Apr 1, 2020
Tagged in: Access to Care
COVID-19
Coalition letter to HHS and CMS urging decisive action to slow the spread of COVID-19 among people with pre-existing conditions and vulnerable populations
Published: Mar 30, 2020
Tagged in: Access to Care
COVID-19
NORD/EURORDIS-Rare Diseases Europe joint statement on COVID-19 and orphan drug legislation
Published: Mar 30, 2020
Tagged in: COVID-19
Coalition letter to Virginia Governor Northam asking him to add patient coverage details to the Short Term Limited Duration bills (SB 404/ HB 1037)
Published: Mar 27, 2020
Tagged in: Access to Affordable, Adequate Coverage
Short-Term, Limited-Duration Health Plans and Association Health Plans
Coalition comments to Virginia Governor asking him to veto Senate Bill 861, and Senate Bill 235/House Bill 795 that would allow for Association Health Plans
Published: Mar 27, 2020
Tagged in: Access to Affordable, Adequate Coverage
Short-Term, Limited-Duration Health Plans and Association Health Plans
NORD comments in support of FDA Rare Disease Day 2020: Supporting the Future of Rare Disease Product Development
Published: Mar 27, 2020
Tagged in: Access to Innovative Medicines and Therapies
Advancing Rare Disease Research and Regulatory Science
Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP)
Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP)
NORD letter to Governors asking that they loosen their state licensure requirements to better facilitate telemedicine across state lines
Published: Mar 26, 2020
Tagged in: COVID-19
Telehealth
NORD comments to CMS regarding its request for information on coordinating care from out-of-state providers for Medicaid eligible children with medically complex conditions
Published: Mar 23, 2020
Tagged in: Access to Affordable, Adequate Coverage
Out-of-State Care for Children on Medicaid
Coalition statement celebrating the Affordable Care Act on its 10th Anniversary
Published: Mar 23, 2020
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
NORD letters to House and Senate regarding Medicare coverage of home-based infusion during coronavirus emergency
Published: Mar 22, 2020
Tagged in: Access to Care
COVID-19
Coalition comments to CMS regarding Indiana’s Section 1115 waiver
Published: Mar 20, 2020
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
Coalition letter sent to each state asking for increased flexibility within their Medicaid program for COVID19
Published: Mar 20, 2020
Tagged in: Access to Care
COVID-19
Coalition letter to Congress asking for additional flexibility with regard to filling prescriptions in the midst of the coronavirus pandemic
Published: Mar 20, 2020
Tagged in: Access to Care
COVID-19
Coalition statement urging the Senate to quickly pass the first COVID19 support package
Published: Mar 16, 2020
Tagged in: Access to Care
COVID-19
Coalition letter urging the Senate to quickly pass the first COVID19 support package
Published: Mar 16, 2020
Tagged in: Access to Care
COVID-19
NORD letter to West Virginia Governor urging him to sign SB 269 into law, to create a rare disease advisory council
Published: Mar 12, 2020
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD testimony to the Tennessee House Subcommittee on Public Health in support of House Bill 2505, to create a rare disease advisory council
Published: Mar 10, 2020
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD letter to Utah Representative Lee Perry in support of HB 106, to create a Rare Disease Advisory Council
Published: Mar 9, 2020
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD testimony to the Tennessee Senate Health and Welfare committee in support of Senate Bill 2124, to create a rare disease advisory council
Published: Mar 9, 2020
Tagged in: Rare Disease Advisory Councils (RDACs)
Coalition letter to CMS in opposition to its recent proposal to begin allowing states to apply for a block grant style of funding
Published: Mar 9, 2020
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD comments to FDA regarding its proposed rule on importation
Published: Mar 9, 2020
Tagged in: Access to Innovative Medicines and Therapies
Protecting FDA Standards for Safe and Effective Drugs
Coalition comments to CMS in support of Georgia’s efforts to establish a reinsurance program
Published: Mar 6, 2020
Tagged in: Access to Affordable, Adequate Coverage
Section 1332 Waivers
NORD testimony to Connecticut in support of Senate Bill 336, regarding copay assistance
Published: Mar 5, 2020
Tagged in: Access to Affordable, Adequate Coverage
Copay Assistance
NORD letter to Kentucky in support of House Bill 72, regarding copay assistance
Published: Mar 4, 2020
Tagged in: Access to Affordable, Adequate Coverage
Copay Assistance
NORD testimony to South Dakota in support of Senate Bill 155, legislation to create common-sense step therapy protections
Published: Mar 3, 2020
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
NORD joined coalition comments to Missouri opposing Joint Resolution 60
Published: Mar 2, 2020
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Coalition statement applauding the Supreme Court’s decision to take up Texas v. US this session
Published: Mar 2, 2020
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
All Copays Count coalition comments to the Department of Health and Human Services (HHS) in opposition to a provision within the proposed Notice of Benefit and Payment Parameters for 2021 pertaining to copay assistance
Published: Mar 2, 2020
Tagged in: Access to Affordable, Adequate Coverage
Copay Assistance
Coalition comments to the Administration regarding the proposed Notice of Benefit and Payment Parameters for 2021
Published: Mar 2, 2020
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Coalition principles regarding surprise medical billing
Published: Feb 24, 2020
Tagged in: Access to Affordable, Adequate Coverage
Surprise Medical Billing
NORD comments given at the Food and Drug Administration’s (FDA) Rare Disease Day public meeting
Published: Feb 24, 2020
Tagged in: Access to Innovative Medicines and Therapies
Advancing Rare Disease Research and Regulatory Science
Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP)
Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP)
NORD joins a coalition one-pager in Oklahoma to support House Bill 3737, regarding copay accumulator adjustment programs
Published: Feb 24, 2020
Tagged in: Access to Affordable, Adequate Coverage
Copay Assistance
NORD testimony to the Michigan House Health Policy Committee regarding House Bill 5465, legislation to form a Rare Disease Review Committee
Published: Feb 20, 2020
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD letter to Georgia in support of a Rare Disease Advisory Council
Published: Feb 19, 2020
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD joins a coalition letter to Indiana in opposition to SB 184, legislation that would allow for the sale of non-ACA compliant health plans through the Indiana Farm Bureau
Published: Feb 13, 2020
Tagged in: Access to Affordable, Adequate Coverage
Short-Term, Limited-Duration Health Plans and Association Health Plans
Coalition statement regarding the House Committee on Ways and Means’ markup of surprise medical billing legislation
Published: Feb 12, 2020
Tagged in: Access to Affordable, Adequate Coverage
Surprise Medical Billing
NORD testimony to South Dakota in support of SB 155, legislation to reform step therapy practices
Published: Feb 11, 2020
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
Coalition statement regarding the House Committee on Education and Labor’s markup of surprise medical billing legislation
Published: Feb 11, 2020
Tagged in: Access to Affordable, Adequate Coverage
Surprise Medical Billing
Coalition comments to CMS regarding Georgia’s Section 1115 waiver
Published: Feb 7, 2020
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD submits testimony to Arizona in support of HB 2420, legislation to reform step therapy practices
Published: Feb 5, 2020
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
Coalition statement for the record regarding proposed changes to the poverty line calculation
Published: Feb 5, 2020
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
NORD submits testimony to Oregon in support of HB 4102, to reform utilization management protocols
Published: Feb 3, 2020
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
NORD comments on the Conditional Approval Act
Published: Feb 3, 2020
Tagged in: Access to Innovative Medicines and Therapies
Protecting FDA Standards for Safe and Effective Drugs
Coalition comments to CMS expressing concerns about the Medicaid fiscal accountability proposal and its potential to lead to significant cuts
Published: Jan 31, 2020
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
NORD comments to the Social Security Administration (SSA) regarding continuing disability reviews (CDRs)
Published: Jan 31, 2020
Tagged in: Access to Affordable, Adequate Coverage
SSI/SSDI
Coalition statement in opposition to CMS’ new proposal to allow for block grant funding of Medicaid
Published: Jan 30, 2020
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
Coalition one-pager to California in support of AB 2144, to reform utilization management protocols
Published: Jan 27, 2020
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
NORD submits testimony to the Ohio House Health Committee in support of HB 412, an act to create a Rare Disease Advisory Council
Published: Jan 21, 2020
Tagged in: Rare Disease Advisory Councils (RDACs)
Coalition statement expressing disappointment that the Supreme Court will not be reviewing the Texas v. US ruling in an expedited manner
Published: Jan 21, 2020
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Coalition letter to CMS requesting a meeting to discuss several concerns about recent policies
Published: Jan 17, 2020
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
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