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 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 submits letter in support of CT S.B. No. 206, concerning the expansion of the Katie Beckett Waiver program
Published: Mar 5, 2024
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
NORD Supports SB5821 in Washington to Protect Audio-Only Telehealth Services
Published: Mar 5, 2024
Tagged in: Telehealth
NORD Joins Michigan-Based and National Organizations Representing Patients and Their Providers Support H.B. 5339 Protect Michiganders from Harmful Step Therapy Protocols
Published: Mar 4, 2024
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
Access to Innovative Medicines and Therapies
Utilization Management
NORD and other stakeholders submit letter to Congress urging passage of the PASTEUR Act
Published: Feb 29, 2024
Tagged in: Funding for Ongoing Science
Public Health
Research
NORD submits statement for the record in advance of crucial Rare Disease Day hearing
Published: Feb 28, 2024
Tagged in: Access to Affordable, Adequate Coverage
Access to Innovative Medicines and Therapies
Advancing Rare Disease Research and Regulatory Science
Out-of-State Care for Children on Medicaid
NORD Joins Patient Organizations in Raising Concern with Kentucky Bill Proposal to Institute a State Coverage Benefit Mandate Defrayal Process
Published: Feb 27, 2024
Tagged in: Access to Affordable, Adequate Coverage
NORD joins leading patient groups in urging HHS to finalize crucial rules with significant impacts on patient access
Published: Feb 26, 2024
Tagged in: Access to Affordable, Adequate Coverage
NORD joins leading patient and provider groups in urging Congress to act on telehealth
Published: Feb 22, 2024
Tagged in: Telehealth
NORD joins leading patient organizations in providing comments to Florida on expanding eligibility for Children’s Health Insurance Program (CHIP)
Published: Feb 21, 2024
Tagged in: Access to Affordable, Adequate Coverage
NORD joins 21 other patient organizations in urging the Department of Labor to rescind 2018 Association Health Plan Final Rule
Published: Feb 21, 2024
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
Short-Term, Limited-Duration Health Plans and Association Health Plans
NORD Supports Access to Out-of-State Telehealth Providers for Coloradans with Support of SB24-141
Published: Feb 21, 2024
Tagged in: Telehealth
NORD submits comments to CMS urging adequate reimbursement for orphan therapies in the inpatient setting
Published: Feb 21, 2024
Tagged in: Medicare, Medicaid, and Private Health Insurance Coverage
NORD’s Statement in Support for Reauthorization of Rare Pediatric Disease Priority Review Voucher Program
Published: Feb 15, 2024
Tagged in: Access to Innovative Medicines and Therapies
Advancing Rare Disease Research and Regulatory Science
Research
NORD is Proud to Support Rare Disease Advisory Council Bill HB2758 in Arizona
Published: Feb 7, 2024
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD submits comments to NIST on 88 FR 86693, the Draft Interagency Guidance Framework for the Exercise of March-In Rights
Published: Feb 6, 2024
Tagged in: Access to Affordable Medicines
NORD Supports HF2157 to Ensure Coverage of Biomarker Testing in Iowa
Published: Feb 5, 2024
Tagged in: Access to Affordable, Adequate Coverage
NORD joins leading patient organizations in submitting comments to CMS on Medicaid Unwinding IFR
Published: Feb 2, 2024
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
NORD joins 24 Patient/Provider Groups in Urging the Supreme Court to Preserve FDA Authority by Reversing Fifth Circuit’s Decision in Alliance for Hippocratic Medicine et al. v FDA et al.
Published: Jan 31, 2024
Tagged in: Access to Affordable, Adequate Coverage
NORD Submits Written Testimony in Support of Biomarker Coverage in Hawaii
Published: Jan 30, 2024
Tagged in: Access to Innovative Medicines and Therapies
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
One in 10 Americans lives with rare disease, many of whom fight a daily battle to access the care and support they need. Your gift to the National Organization for Rare Disorders (NORD®) funds life-changing programs and helps us advance policies and research to ensure that everyone gets the care they need AND deserve.
