Policy Statements & Letters to Policymakers

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 policy@rarediseases.org if you have questions or need additional information. 

NORD Joins 15 Leading Patient Advocacy Groups in Support of Massachusetts’ 1115 Demonstration Waiver Request

Published: Nov 29, 2023
Tagged in: Access to Affordable, Adequate Coverage

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NORD Joins Leading Patient Advocacy Groups in Support of New York Section 1332 Waiver Extension Updates

Published: Nov 29, 2023
Tagged in: Access to Affordable, Adequate Coverage

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NORD joins 110 organizations in urging Congressional Leadership to pass comprehensive PBM reform legislation with the inclusion of the Safe Step Act in the final package

Published: Nov 8, 2023
Tagged in: Access to Affordable, Adequate Coverage

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NORD Joins Dozens of Patient Organizations in Support of Coverage for Biomarker Testing in Pennsylvania

Published: Nov 7, 2023
Tagged in: Access to Affordable, Adequate Coverage Access to Diagnostics

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NORD submits comments to the Special Committee on Aging regarding the Committee’s October 26, 2023 hearing “Unlocking Hope: Access to Therapies for People with Rare, Progressive, and Serious Diseases”

Published: Nov 2, 2023
Tagged in: Access to Affordable Medicines Access to Affordable, Adequate Coverage Access to Innovative Medicines and Therapies

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NORD joins numerous organizations in urging Congress to the enact the 2024 Defense Appropriations Act and to ensure full funding levels for the Defense Health Research Programs, including the Congressionally Directed Medical Research Programs (CDMRP)

Published: Oct 27, 2023
Tagged in: Access to Affordable Medicines Access to Affordable, Adequate Coverage

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NORD sends comments to the Maryland Prescription Drug Affordability Board regarding the new proposed chapter of regulation for the Cost Review Study Process

Published: Oct 23, 2023
Tagged in: Access to Affordable Medicines Access to Affordable, Adequate Coverage

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NORD joins leading patient organizations in submitting comments on the Mental Health Parity and Addiction Equity Act (MHPAEA) proposed rule

Published: Oct 16, 2023
Tagged in: Access to Affordable, Adequate Coverage Access to Innovative Medicines and Therapies Public Health

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NORD joins key patient advocacy organizations in submitting feedback to the House Budget Committee Health Care Task Force request for information (RFI)

Published: Oct 15, 2023
Tagged in: Access to Affordable Medicines Access to Affordable, Adequate Coverage Access to Diagnostics Access to Innovative Medicines and Therapies

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NORD joins leading patient organizations in letter to CMS urging the agency to protect patient access to Medicaid

Published: Oct 10, 2023
Tagged in: Access to Affordable, Adequate Coverage

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NORD submits comments on Docket No. FDA-2022-D-2629-0002- “Postmarketing Approaches to Obtain Data on Populations Underrepresented in Clinical Trials for Drugs and Biological Products”

Published: Oct 10, 2023
Tagged in: Access to Innovative Medicines and Therapies Rare Disease Clinical Trials

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NORD and the All Copays Count Coalition sends a letter of support regarding the U.S. District Court Decision on 2021 Notice of Benefit and Payment Parameters Final Rule

Published: Oct 6, 2023
Tagged in: Access to Affordable Medicines

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NORD joins 19 patient advocacy organizations in a statement for the record regarding “Reduced Care for Patients: Fallout from Flawed Implementation of the Surprise Medical Billing Protections

Published: Oct 3, 2023
Tagged in: Access to Affordable Medicines Access to Affordable, Adequate Coverage Surprise Medical Billing

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NORD submits recommendations to the Michigan Senate Committee on Finance, Insurance, and Consumer Protection regarding changes to SB 483 (Camilleri) and its companion bills, SB 484 (Klinefelt) and SB 485 (McDonald Rivet)

Published: Sep 20, 2023
Tagged in: Access to Affordable Medicines Access to Affordable, Adequate Coverage

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NORD joins leading patient advocacy organizations in submitting comments to CMS on implementation of the Medicare Prescription Payment Plan

Published: Sep 20, 2023
Tagged in: Access to Affordable, Adequate Coverage Copay Assistance Medicare, Medicaid, and Private Health Insurance Coverage Out of Pocket Prescription Drug Costs

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NORD joins leading patient organizations in providing comments to CMS on the Medicare Prescription Payment Plan

Published: Sep 20, 2023
Tagged in: Access to Affordable Medicines Copay Assistance Medicare, Medicaid, and Private Health Insurance Coverage Out of Pocket Prescription Drug Costs

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NORD Joins Patient Advocacy Organizations in Support of California’s SB 496 Regarding Biomarker Testing

Published: Sep 15, 2023
Tagged in: Access to Innovative Medicines and Therapies

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NORD Requests a meeting with the Colorado Prescription Drug Affordability Board to assist in patient involvement

Published: Sep 12, 2023
Tagged in: Access to Innovative Medicines and Therapies Out of Pocket Prescription Drug Costs

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NORD joins patient advocacy organizations in submitting comments for the Request for Information Regarding Medical Payment Products (CMS–2023

Published: Sep 11, 2023
Tagged in: Access to Affordable Medicines Access to Affordable, Adequate Coverage

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NORD joins 27 patient advocacy organizations in submitting comments to regarding Short-Term, Limited-Duration Insurance; Independent, Noncoordinated Excepted Benefits Coverage; Level-Funded Plan Arrangements; and Tax Treatment of Certain Accident and Health Insurance (CMS-9904-P)

Published: Sep 11, 2023
Tagged in: Access to Affordable Medicines Access to Affordable, Adequate Coverage

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NORD joins leading patient advocacy organizations in providing support for Washington’s Medicaid Transformation Project Amendment

Published: Sep 8, 2023
Tagged in: Access to Affordable, Adequate Coverage Medicaid Section 1115 Waivers

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NORD signs on to a letter regarding the Commonwealth Essential Health Benefits Benchmark Plan—Public Comment Period; Notice 2023-14

Published: Sep 1, 2023
Tagged in: Access to Affordable Medicines Access to Affordable, Adequate Coverage Access to Diagnostics Access to Innovative Medicines and Therapies

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NORD joins patient advocacy organizations in a letter to the U.S. Department of Labor regarding Alternative Funding Programs

Published: Sep 1, 2023
Tagged in: Public Health

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NORD submits comments on CMS National Coverage Analysis Evidence Review and Coverage with Evidence Development Guidelines

Published: Aug 21, 2023
Tagged in: Access to Affordable, Adequate Coverage

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NORD signs on to a letter of support led by the NIAMS Coalition for the NIH Clinical Trial Diversity Act (H.R. 3505)

Published: Aug 16, 2023
Tagged in: Access to Innovative Medicines and Therapies Advancing Rare Disease Research and Regulatory Science Clinical Trials

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NORD joins the Amicus Brief from The Leukemia & Lymphoma Society for the Haller v HHS case

Published: Aug 8, 2023

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NORD submits comments to Docket No. FDA-2022-D-2870 for “Decentralized Clinical Trials for Drugs, Biological Products, and Devices”

Published: Aug 1, 2023
Tagged in: Access to Affordable Medicines Access to Affordable, Adequate Coverage Access to Innovative Medicines and Therapies

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NORD sends a letter to the Colorado Prescription Drug Affordability Advisory Council with recommendations to address prescription drug costs

Published: Jul 28, 2023
Tagged in: Access to Affordable Medicines Access to Innovative Medicines and Therapies

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NORD joins 34 patient advocacy organizations in urging the Biden administration to take immediate steps to protect patients’ Medicaid coverage

Published: Jul 28, 2023
Tagged in: Access to Affordable, Adequate Coverage Medicare, Medicaid, and Private Health Insurance Coverage

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NORD joins 12 national patient advocacy organizations submit a letter to the Senate Finance Committee regarding the Modernizing & Ensuring PBM Accountability Act

Published: Jul 26, 2023
Tagged in: Access to Affordable Medicines Access to Affordable, Adequate Coverage

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NORD signs on to a letter to the Senate Appropriations Committee regarding USPSTF modernization and FY24 funding

Published: Jul 26, 2023
Tagged in: Access to Affordable Medicines Access to Affordable, Adequate Coverage

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NORD signs on to a letter to the House Appropriations Committee regarding USPSTF modernization and FY24 funding

Published: Jul 26, 2023
Tagged in: Access to Affordable Medicines Access to Affordable, Adequate Coverage

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Delaware Enacts Law to Address Needs of Rare Disease Patients and Families

Published: Jul 26, 2023
Tagged in: Rare Disease Advisory Councils (RDACs)

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NORD submits comments to CMS on proposed changes to the Medicaid Drug Rebate Program

Published: Jul 25, 2023
Tagged in: Access to Affordable Medicines Medicare, Medicaid, and Private Health Insurance Coverage

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NORD joins 21 patient organizations in submitting comments to the Senate HELP committee on including protections for individuals with chronic conditions in the Pandemic and All-Hazards Preparedness Act (PAHPA) reauthorization

Published: Jul 21, 2023
Tagged in: COVID-19

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NORD joins 215 organizations and Children’s Hospitals in encouraging members of Congress to support the Accelerating Kids’ Access to Care Act

Published: Jul 20, 2023
Tagged in: Access to Affordable, Adequate Coverage Out-of-State Care for Children on Medicaid

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NORD and 80+ patient advocacy and provider organizations in the All Copays Count Coalition (ACCC) request the Senate to include HELP Copays Act in any PBM reform package that comes to vote

Published: Jul 19, 2023
Tagged in: Access to Affordable Medicines Access to Affordable, Adequate Coverage

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NORD joins leading patient and provider organizations in urging NY Governor Hochul to promptly sign S1196

Published: Jul 17, 2023
Tagged in: Access to Innovative Medicines and Therapies

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NORD joins 64 organizations in urging Ohio House of Representatives to move HB24 forward without the addition of unnecessary medical necessity criteria and an arbitrary monetary cap on testing costs

Published: Jul 17, 2023

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NORD joins other 19 other patient organizations in providing comments to CMS on Arkansas’ ARHOME Section 1115 Amendment

Published: Jul 14, 2023
Tagged in: Access to Affordable, Adequate Coverage Medicaid Section 1115 Waivers

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NORD submits comments on “Pediatric Drug Development: Regulatory Considerations — Complying With the Pediatric Research Equity Act and Qualifying for Pediatric Exclusivity Under the Best Pharmaceuticals for Children Act”

Published: Jul 13, 2023
Tagged in: Access to Affordable, Adequate Coverage Access to Innovative Medicines and Therapies

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NORD joins 30 other patient organizations in opposition to H.R. 824, the Telehealth Benefit Expansion for Workers Act of 2023

Published: Jul 12, 2023
Tagged in: Telehealth

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NORD joins 35 other patient organizations in submitting comments to White House leadership conveying concerns about nationwide losses in Medicaid coverage

Published: Jul 10, 2023
Tagged in: Access to Affordable, Adequate Coverage Medicare, Medicaid, and Private Health Insurance Coverage

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NORD and 36 patient organizations applaud the Biden administration’s proposed rule to protect patients from short-term health plans

Published: Jul 7, 2023
Tagged in: Access to Affordable Medicines Access to Affordable, Adequate Coverage

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NORD provides comments regarding Docket No. FDA-2023-D-0026- “Patient-Focused Drug Development: Incorporating Clinical Outcome Assessments Into Endpoints for Regulatory Decision-Making”

Published: Jul 5, 2023
Tagged in: Access to Innovative Medicines and Therapies Advancing Rare Disease Research and Regulatory Science Clinical Trials

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NORD joins leading patient organizations in providing comments on New York’s Section 1332 State Innovation Waiver

Published: Jul 5, 2023
Tagged in: Access to Affordable, Adequate Coverage Affordable Care Act Section 1332 Waivers

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Final Inflation Reduction Act Guidance Risks Stifling Innovation for Rare Disease Community

Published: Jun 30, 2023
Tagged in: Advancing Rare Disease Research and Regulatory Science Medicare, Medicaid, and Private Health Insurance Coverage Orphan Drug Act Research

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NORD submits comments to the Institute for Clinical and Economic Review (ICER) on proposed revisions to its Value Assessment Framework

Published: Jun 30, 2023
Tagged in: Access to Affordable Medicines Value-based Pricing Assessments

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NORD and leading patient organizations submit comments to CMS on the Medicaid and Children’s Health Insurance Program (CHIP) Managed Care Access Proposed Rule

Published: Jun 29, 2023
Tagged in: Access to Affordable, Adequate Coverage

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NORD joins 25 other patient organizations in submitting comments to CMS on the Medicaid Access Proposed Rule

Published: Jun 29, 2023
Tagged in: Access to Affordable, Adequate Coverage

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