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.
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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 comments on changes to Medicaid maintenance of effort requirements that could lead to gaps in coverage
Published: Dec 18, 2020
Tagged in: Access to Care
COVID-19
Patient Groups Call on Congress to Permanently End Surprise Medical Billing
Published: Dec 16, 2020
Tagged in: Access to Affordable, Adequate Coverage
Surprise Medical Billing
Coalition letter to Oklahoma Governor Stitt regarding the state’s draft crisis standards of care
Published: Dec 11, 2020
Tagged in: Anti-discrimination
COVID-19
Coalition letter to New Mexico Governor Lujan Grisham regarding the state’s draft crisis standards of care
Published: Dec 11, 2020
Tagged in: Anti-discrimination
COVID-19
Coalition letter to Montana Governor Bullock regarding the state’s draft crisis standards of care
Published: Dec 11, 2020
Tagged in: Anti-discrimination
COVID-19
NORD submits amicus brief for State of New York vs. United States Department of Health and Human Services opposing the rule promulgated by HHS that allows discrimination in provision of health care services
Published: Dec 9, 2020
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Coalition letter to Congressional Leadership urging swift action on telehealth
Published: Dec 9, 2020
Tagged in: Telehealth
Patient Groups Urge U.S. District Court to Prevent Discrimination Against LGBTQ Patients
Published: Dec 9, 2020
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Coalition letter urging Congress to pass comprehensive surprise medical billing protections for patients and consumers in an end of year legislative package
Published: Dec 4, 2020
Tagged in: Access to Affordable, Adequate Coverage
Surprise Medical Billing
Coalition comments on Proposed Rule HHS– OS–2020–0012, “Securing Updated and Necessary Statutory Evaluations Timely”
Published: Dec 4, 2020
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
Coalition letter asking Congress to fund research, development, and vital public health agencies.
Published: Dec 2, 2020
Tagged in: COVID-19
Funding for Ongoing Science
NORD letter to New Hampshire Health and Human Services Commissioner Shibinette following up on the state’s crisis standards of care guidelines.
Published: Dec 1, 2020
Tagged in: Anti-discrimination
COVID-19
Coalition letter to Michigan House Ways and Means Committee in support of HB 5944, a bill regarding copay assistance.
Published: Nov 30, 2020
Tagged in: Access to Affordable, Adequate Coverage
Copay Assistance
Coalition letter to the Massachusetts House of Representatives regarding step therapy protocols.
Published: Nov 23, 2020
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
Coalition letter to Massachusetts Budget Conferees requesting extension of the state law allowing the use of manufacturer copay assistance.
Published: Nov 23, 2020
Tagged in: Access to Affordable, Adequate Coverage
Copay Assistance
Coalition letter to President-Elect Biden outlining recommendations to ensure affordable and accessible health coverage during the COVID-19 pandemic.
Published: Nov 23, 2020
Tagged in: Access to Care
COVID-19
NORD comments on the draft proposal for the five-year renewal of Arizona’s Demonstration project under Section 1115 of the Social Security Act.
Published: Nov 20, 2020
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD letter to Virginia lawmakers on ensuring access to medications through the state Medicaid program.
Published: Nov 20, 2020
Tagged in: Access to Affordable Medicines
Coalition letter to South Dakota Governor Noem urging the state to adopt crisis standards of care guidelines.
Published: Nov 19, 2020
Tagged in: Anti-discrimination
COVID-19
Coalition letter to North Dakota Governor Burgum urging the state to adopt crisis standards of care guidelines.
Published: Nov 19, 2020
Tagged in: Anti-discrimination
COVID-19
Coalition letter to Arkansas Governor Hutchinson urging the state to adopt crisis standards of care guidelines.
Published: Nov 19, 2020
Tagged in: Anti-discrimination
COVID-19
Coalition letter to Indiana Governor Holcomb urging the state to adopt crisis standards of care guidelines.
Published: Nov 19, 2020
Tagged in: Anti-discrimination
COVID-19
NORD, ADA, NPF Letter on Telehealth Copay Changes to Insurers
Published: Nov 12, 2020
Tagged in: Telehealth
NORD letter to the Ohio House Health Committee in support of HB 469, a bill regarding copay accumulators.
Published: Nov 10, 2020
Tagged in: Access to Affordable, Adequate Coverage
Copay Assistance
Coalition statement urging the U.S. Supreme Court to prioritize patient protections, including those for people with pre-existing conditions, when it hears oral arguments Tuesday in the case of California v. Texas.
Published: Nov 9, 2020
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
NORD comment letter on a proposed new definition of “reasonable and necessary” to help determine coverage of items and services under Medicare.
Published: Nov 2, 2020
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
Coalition comments on Washington’s proposed rule R-2019-11, a rule regarding prescription drug utilization management.
Published: Oct 26, 2020
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
Coalition comments on South Dakota’s proposed rule regarding short-term, limited-duration health plans and short-term major medical plans.
Published: Oct 23, 2020
Tagged in: Access to Affordable, Adequate Coverage
Short-Term, Limited-Duration Health Plans and Association Health Plans
NORD letter to the Chairman of the New Jersey General Assembly Health Committee in support of Assembly bill 4815, a bill regarding step therapy protocols.
Published: Oct 21, 2020
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
Medicare Part D Open Enrollment guide from the MAPRx Coalition
Published: Oct 20, 2020
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
Stakeholder letter endorsing the Accelerating Kids Access to Care Act, to improve access to out-of-state providers for children with complex medical conditions in Medicaid.
Published: Oct 20, 2020
Tagged in: Access to Affordable, Adequate Coverage
Out-of-State Care for Children on Medicaid
Coalition statement on the approval of Georgia’s 1115 waiver and pending approval of the state’s 1332 waiver, which reduce access to comprehensive health insurance for patients.
Published: Oct 16, 2020
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
Section 1332 Waivers
Press release regarding “The 100 Days Report: A Patient-First Blueprint,” a coalition report outlining recommendations for the first 100 days of the next Administration and Congress.
Published: Oct 13, 2020
Tagged in: Access to Affordable, Adequate Coverage
Coalition report outlining recommendations for the first 100 days of the next Administration and Congress.
Published: Oct 13, 2020
Tagged in: Access to Affordable, Adequate Coverage
Press release regarding coalition letter to governors on the impact of COVID-19 on voters with rare, serious and chronic diseases.
Published: Oct 9, 2020
Tagged in: Anti-discrimination
COVID-19
Coalition letter to President Trump regarding the September 24 Executive Orders.
Published: Oct 7, 2020
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Surprise Medical Billing
NORD letter to the Michigan House Ways and Means Committee in support of House Bill 5944, a bill regarding prescription drug copay assistance.
Published: Oct 6, 2020
Tagged in: Access to Affordable, Adequate Coverage
Copay Assistance
Comment letter on the telehealth provisions of the FY 2021 Medicare Physician Fee Schedule
Published: Oct 2, 2020
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
Telehealth
Letter to NY Governor Cuomo, Chair of the National Governors Association, on the impact of COVID-19 on Voters with Rare, Serious and Chronic Diseases.
Published: Oct 2, 2020
Tagged in: Anti-discrimination
COVID-19
Coalition letter to House leadership in support of H.R. 7647, a bill regarding copay accumulators.
Published: Sep 29, 2020
Tagged in: Access to Affordable, Adequate Coverage
Copay Assistance
NORD joins ad in support of government decisions on COVID-19 being based solely on scientific evidence.
Published: Sep 25, 2020
Tagged in: COVID-19
Coalition letter in support of Michigan House Bill 5944, a bill regarding copay accumulators.
Published: Sep 23, 2020
Tagged in: Access to Affordable, Adequate Coverage
Copay Assistance
Coalition press release to call for government decisions to be based solely on evidence, not politics
Published: Sep 22, 2020
Tagged in: COVID-19
Coalition one-pager on Michigan copay accumulators.
Published: Sep 21, 2020
Tagged in: Access to Affordable, Adequate Coverage
Copay Assistance
Coalition comments to the Department of Health and Human Services and Department of the Treasury regarding Georgia’s 1332 waiver application.
Published: Sep 18, 2020
Tagged in: Access to Affordable, Adequate Coverage
Section 1332 Waivers
Coalition comments on HHS proposed guidance practices
Published: Sep 16, 2020
Tagged in: Access to Affordable, Adequate Coverage
Coalition comments opposing Florida’s request to extend its current Medical Managed Assistance 1115 demonstration.
Published: Sep 14, 2020
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
Coalition letter to the Department of Health and Human Services and Congressional Leaders outlining coalition telehealth principles.
Published: Sep 11, 2020
Tagged in: Telehealth
Coalition Letter to House Appropriations Committee on Support for Newborn Screening Program
Published: Sep 9, 2020
Tagged in: Access to Diagnostics
Appropriations
Newborn Screening
Coalition Letter to Senate Appropriations Committee on Support for Newborn Screening Program
Published: Sep 9, 2020
Tagged in: Access to Diagnostics
Appropriations
Newborn Screening
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