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
NORD submits testimony to the Massachusetts Joint Committee on Financial Services in support of House Bill 1153 , which would require health insurance coverage for certain medically necessary services related to functional repair or restoration of craniofacial disorders.
Published: Jul 27, 2021
Tagged in: Access to Affordable, Adequate Coverage
NORD joins letter to Congressional leadership along with 54 patient organizations asking that provisions to improve medication access in emergencies is included in upcoming pandemic preparedness legislation.
Published: Jul 27, 2021
Tagged in: COVID-19
NORD joins a letter to Congressional Leaders with over 400 organizations supporting permanent telehealth Medicare reforms
Published: Jul 26, 2021
Tagged in: Telehealth
NORD Submits Comments to Reps. DeGette and Upton on 21st Century Cures 2.0 Discussion Draft
Published: Jul 26, 2021
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
Access to Diagnostics
Access to Innovative Medicines and Therapies
Advancing Rare Disease Research and Regulatory Science
COVID-19
NORD joins several patient organizations in a statement applauding the Biden administration rule implementing the No Surprises Act
Published: Jul 14, 2021
Tagged in: Access to Affordable, Adequate Coverage
Surprise Medical Billing
NORD submits testimony to the Massachusetts Joint Committee on Health Care Financing in support of Senate Bill 756 and House Bill 1311 , step therapy reform legislation
Published: Jul 9, 2021
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
NORD and 19 patient organizations submit comments on the progress of the TennCare III demonstration
Published: Jul 9, 2021
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD and 30 other patient organizations submit a letter of support to the California Assembly Appropriations Committee in support of Senate Bill 247 to establish an RDAC
Published: Jul 8, 2021
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD and 30 other patient organizations submit a letter of support to the California Assembly Committee on Health in support of Senate Bill 247 to establish an RDAC
Published: Jun 30, 2021
Tagged in: Rare Disease Advisory Councils (RDACs)
FDA’S Accelerated Approval Pathway: A Rare Disease Perspective
Published: Jun 30, 2021
Tagged in: Access to Innovative Medicines and Therapies
NORD and 22 organizations submitted an amicus curiae brief in the Missouri Supreme Court on the vital role that the implementation of Medicaid expansion would have in the lives of hundreds of thousands of Missourians
Published: Jun 30, 2021
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
NORD Submits Comments to the National Center for Advancing Translational Sciences (NCATS) RFI on Facilitating the Early Diagnosis and Equitable Delivery of Gene-Targeted Therapies to Individuals with Rare Diseases
Published: Jun 30, 2021
Tagged in: Access to Innovative Medicines and Therapies
Advancing Rare Disease Research and Regulatory Science
Gene Therapies
NORD and seventeen coalition partners submit letter on the importance of Medicaid expansion in response to Texas’s proposed 1115 waiver
Published: Jun 25, 2021
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD joins coalition comments with 17 other patient organizations to the Administration in support of extending Colorado’s 1332 Waiver
Published: Jun 25, 2021
Tagged in: Access to Affordable, Adequate Coverage
Section 1332 Waivers
NORD signs onto a coalition letter of support with 17 other patient organizations in support of California AB 347, step therapy reform legislation
Published: Jun 23, 2021
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
NORD submits letter of support to the PA Senate Banking and Insurance Committee in support of Senate Bill 225, step therapy and prior authorization reform legislation
Published: Jun 22, 2021
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
NORD and 34 patient organizations representing millions of people living with serious and chronic health conditions statement regarding the Supreme Court’s ruling upholding the Affordable Care Act
Published: Jun 17, 2021
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
NORD submits letter of support to Rhode Island’s Speaker of the House in support of Senate Bill 302/House Bill 5704, step therapy reform legislation
Published: Jun 15, 2021
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
NORD and 13 patient organizations submit letter opposing language within the proposed budget that would harm access to care for Ohioans with Medicaid coverage
Published: Jun 15, 2021
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
NORD and 28 other patient organizations submit a letter of support to Louisiana Governor urging him to sign HB 460 into law, to establish an RDAC
Published: Jun 14, 2021
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD joins the Patient & Providers for Medical Nutrition Equity fact sheet on the Medical Nutrition Equity Act
Published: Jun 10, 2021
Tagged in: Access to Affordable, Adequate Coverage
Medical Nutrition
NORD comments on the draft proposal for Utah’s Medicaid Section 1115 Demonstration Renewal under Section 1115 of the Social Security Act
Published: Jun 10, 2021
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD joins several patient organizations in a letter to the Administration with recommendations on the No Surprises Act interim final rule
Published: Jun 9, 2021
Tagged in: Access to Affordable, Adequate Coverage
Surprise Medical Billing
NORD and 27 other patient organizations submit a letter of support to New Jersey Governor urging him to sign A4016/S2682 into law, to create a Rare Disease Advisory Council (RDAC)
Published: Jun 4, 2021
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD and nine other patient organizations submit a letter of support to Florida Governor urging him to sign SB 272/HB 1373 into law, to create a rare disease advisory council
Published: May 28, 2021
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD and seven other patient organizations send a letter to Members of the Ohio Senate Oversight and Reform Committee expressing continued concern that SB17 would harm access to health care for patients
Published: May 26, 2021
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
NORD and eighteen patient organizations send letter urging CMS to rescind the TennCare III 1115 waiver
Published: May 25, 2021
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD and Rare Action Network Volunteer State Ambassador submitted testimony to the New Jersey General Assembly in support of Assembly Bill 4016 to establish an RDAC
Published: May 20, 2021
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD letter of thanks to Senator Hewitt, cosponsor of Louisiana HB 460, a bill to create a Rare Disease Advisory Council
Published: May 18, 2021
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD and 27 other patient organizations submit a letter of support to the Louisiana Senate Committee on Health and Welfare in support of House Bill 460 to establish an RDAC
Published: May 18, 2021
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD and seven other patient groups release statement strongly opposing decision to halt Medicaid expansion in Missouri
Published: May 14, 2021
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
NORD and Rare Action Network Volunteer Ambassador testimony to the Michigan House Health Policy Committee in support of House Bill 4654 to establish an RDAC
Published: May 13, 2021
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD and 11 other patient organizations submit a letter of support to the Michigan House Health Policy Committee in support of House Bill 4654 to establish an RDAC
Published: May 12, 2021
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD testimony to the Delaware Senate Health and Social Services Committee in support of House Bill 160 that would expand telehealth access with a few modifications
Published: May 11, 2021
Tagged in: Telehealth
NORD endorsement of the Accelerating Kids Access to Care Act, a bill that would ensure that children with Medicaid who require care out of state will not face unnecessary delays.
Published: May 11, 2021
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
Out-of-State Care for Children on Medicaid
NORD letter to Florida Governor urging him to sign SB 272/HB 1373 into law, to create a rare disease advisory council
Published: May 6, 2021
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD joins several patients groups in a statement to Congress to urge them to include health care affordability measures in the next legislative package
Published: May 6, 2021
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
NORD joins other patient groups to the Minnesota House and Senate Conference Committee in support of adopting Article 5, Section 7 of the fourth engrossment of HF 2128 to create a copay benefit option for individual and small-group coverage
Published: May 4, 2021
Tagged in: Access to Affordable, Adequate Coverage
Out of Pocket Prescription Drug Costs
NORD and 21 other patient organizations submit a letter of support to the California Senate Appropriations Committee in support of Senate Bill 247 to establish an RDAC and Rare Disease Ombudsperson
Published: Apr 30, 2021
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD letter to the Oregon Senate Committee on Health Care regarding utilization management
Published: Apr 30, 2021
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
NORD submits written testimony to Rhode Island’s Senate Health and Human Services Committee in support of Senate Bill 302, step therapy reform legislation
Published: Apr 29, 2021
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
NORD statement to the House Ways and Means Committee for the Health Subcommittee Hearing: “Charting the Path Forward for Telehealth”
Published: Apr 28, 2021
Tagged in: Telehealth
NORD letter to the Oregon Senate Committee on Health Care in support of HB2508, a bill to improve telehealth access
Published: Apr 28, 2021
Tagged in: Telehealth
NORD and 26 other patient organizations submit a letter of support to the Louisiana House Committee on Health and Welfare in support of House Bill 460 to establish an RDAC
Published: Apr 27, 2021
Tagged in: Rare Disease Advisory Councils (RDACs)
Rare Action Network Volunteer Ambassador written testimony in support of Louisiana Rare Disease Advisory Council (RDAC)
Published: Apr 27, 2021
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD Joins Leukemia & Lymphoma Society and Over 110 Other Organizations to Support Consumer Assistance Program Funding in Fiscal Year 2022 Labor, HHS Appropriations
Published: Apr 26, 2021
Tagged in: Access to Affordable, Adequate Coverage
Appropriations
NORD joins a coalition letter with over 30 patient advocacy organizations to President Biden outlining health care priorities for the next legislative package
Published: Apr 23, 2021
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Medicare, Medicaid, and Private Health Insurance Coverage
Short-Term, Limited-Duration Health Plans and Association Health Plans
NORD joins a coalition letter with over 30 patient organizations to Congressional leadership outlining health care priorities for the next legislative package
Published: Apr 23, 2021
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Medicare, Medicaid, and Private Health Insurance Coverage
Short-Term, Limited-Duration Health Plans and Association Health Plans
NORD one pager on step therapy patient protections at the state and federal level
Published: Apr 22, 2021
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
NORD letter of support to the Delaware House and Human Development Committee in support of House Bill 160 to support increased access to telehealth after the COVID-19 pandemic
Published: Apr 22, 2021
Tagged in: Telehealth
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