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 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 Rare Disease Centers of Excellence Letter to HHS on Termination of ACHDNC
Published: Apr 6, 2025
Tagged in: Access to Diagnostics
Newborn Screening
NORD CEO Statement on the Termination of the Advisory Committee on Heritable Disorders in Newborns and Children
Published: Apr 4, 2025
Tagged in: Access to Diagnostics
Newborn Screening
Public Health
NORD Opposes Newborn Exemption Bill in Nebraska
Published: Jan 30, 2024
Tagged in: Newborn Screening
NORD Submits Recommendations Relating to SB274/HB570, An Act Establishing a Prescription Drug Affordability Board (PDAB) in the Commonwealth of Virginia
Published: Jan 29, 2024
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
NORD Submits Testimony in Response to Proposals in the NYS FY25 Executive Budget
Published: Jan 25, 2024
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
NORD is Proud to Support SB 1772 for the Creation of a Rare Disease Advisory Council in Oklahoma
Published: Jan 24, 2024
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD submits recommendations to CMS on improving the Medicare Drug Price Negotiation Program (MDPNP) Patient Listening Sessions
Published: Jan 22, 2024
Tagged in: Access to Affordable Medicines
Medicare, Medicaid, and Private Health Insurance Coverage
NORD submits comments in response to Senator Cassidy’s request for information on “Improving Americans’ Access to Gene Therapies”
Published: Jan 22, 2024
Tagged in: Access to Affordable Medicines
Medicare, Medicaid, and Private Health Insurance Coverage
Out of Pocket Prescription Drug Costs
Out-of-State Care for Children on Medicaid
Value-based Pricing Assessments
NORD joins 20 organizations in encouraging Congressional leadership to prioritize newborn screening programs in FY 2024 appropriations
Published: Jan 18, 2024
Tagged in: Access to Diagnostics
Newborn Screening
NORD Submits Comments on Federal Registrar, Volume 88, Number 198: ICD-11 Request for Information
Published: Jan 16, 2024
Tagged in: Access to Affordable, Adequate Coverage
Access to Diagnostics
Access to Innovative Medicines and Therapies
Public Health
NORD is Proud to Support SB 5097 for the Creation of a Rare Disease Advisory Council in Washington
Published: Jan 10, 2024
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD Joins Public Health Groups in Urging Fifth Circuit Court of Appeals to Prevent Discrimination Against LGBTQ+ Patients
Published: Jan 9, 2024
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
Public Health
NORD Joins Patient Advocacy Organizations in Submitting Comments for Notice of Benefit and Payment Parameters for 2025 Proposed Rule; Updating Section 1332 Waiver Public Notice Procedures; Medicaid; Consumer Operated and Oriented Plan (CO-OP) Program; and Basic Health Program (CMS-9895-P)
Published: Jan 9, 2024
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
NORD Submits Written Testimony in Support of Audio-Only Telehealth Services in Washington
Published: Jan 9, 2024
Tagged in: Telehealth
NORD Sends a Letter of Support for Indiana Senate Bill 43 – Establishes a Rare Disease Advisory Council
Published: Jan 4, 2024
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD Sends a Letter of Support for Vermont House Bill 573 – Establishes a Rare Disease Advisory Council
Published: Jan 4, 2024
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD Joins Other Patient Organizations Opposing Missouri SB925/HB2082 Authorizing the Sale of Unregulated Health Products
Published: Jan 3, 2024
Tagged in: Short-Term, Limited-Duration Health Plans and Association Health Plans
NORD Joins Leading Patient Advocacy Organizations in Submitting Comments on the Federal Independent Dispute Resolution Operations
Published: Jan 2, 2024
Tagged in: Access to Affordable, Adequate Coverage
NORD Joins the American Cancer Society and Other Groups in Support of Biomarker Testing Coverage
Published: Jan 1, 2024
Tagged in: Access to Innovative Medicines and Therapies
NORD joins patient groups in applauding proposed rule to strengthen consumer protections in Association Health Plans
Published: Dec 19, 2023
Tagged in: Access to Affordable, Adequate Coverage
Short-Term, Limited-Duration Health Plans and Association Health Plans
NORD joins 15 patient organizations in supporting North Carolina’s Medicaid demonstration extension request
Published: Dec 19, 2023
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
NORD comments on Docket No. FDA-2023-D-2318- Demonstrating Substantial Evidence of Effectiveness With One Adequate and Well-Controlled Clinical Investigation and Confirmatory Evidence
Published: Dec 18, 2023
Tagged in: Advancing Rare Disease Research and Regulatory Science
NORD Joins Leading Patient Advocacy Organizations in Submittting Comments on Processes for Assessing Compliance with Mental Health Parity and Addiction Equity in Medicaid and CHIP
Published: Dec 15, 2023
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
The Orphan Drug Act at 40: Legislative Triumph and the Challenges of Success
Published: Dec 12, 2023
Tagged in: Orphan Drug Act
NORD joins leading patient organizations in encouraging CMS to approve Maryland’s Section 1115 demonstration amendment
Published: Dec 8, 2023
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD Joins Leading Patient Organizations In a Letter To The House of Representatives To Request Adding The PASTEUR Act Within Any Moving Legislative Vehicle To Ensure Its Passage This Year
Published: Dec 6, 2023
Tagged in: Public Health
NORD and EveryLife Foundation Lead 170 Organizations in Urging Congress to Consider the Two Technical Fixes to the IRA’s Orphan Drug Exclusion
Published: Dec 1, 2023
Tagged in: Access to Affordable, Adequate Coverage
NORD Submits Comments on FDA Proposed Rule Medical Devices; Laboratory Developed Tests (88 FR 68006)
Published: Dec 1, 2023
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
Access to Innovative Medicines and Therapies
Advancing Rare Disease Research and Regulatory Science
NORD and EveryLife Foundation Lead 170 Organizations in Urging Congress to Consider the Two Technical Fixes to the IRA’s Orphan Drug Exclusion
Published: Dec 1, 2023
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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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