NORD Issues Letter of Support for Rhode Island S2611/H7822 Regarding Step Therapy Protocols
Published: Mar 18, 2024
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
Access to Innovative Medicines and Therapies
Utilization Management
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NORD submits comments to CMS in response to the Medicare Prescription Payment Plan (MPPP) Draft Guidance – Part Two
Published: Mar 15, 2024
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
Out of Pocket Prescription Drug Costs
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NORD joins coalition of leading patient organizations in submitting comments to CMS on the Medicare Prescription Payment Plan (MPPP) Part 2 Draft Guidance
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NORD Issues Letter of Support for New Jersey A1825 Regarding Step Therapy Protocols
Published: Mar 13, 2024
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
Access to Innovative Medicines and Therapies
Utilization Management
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NORD Sends Letter of Support On Tennessee HB1973 – An Act Relative to Newborn Screening
Published: Mar 12, 2024
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
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NORD Sends a Letter of Support for Provisions of Vermont H.766 Relating to Step Therapy Requirements
Published: Mar 12, 2024
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
Access to Innovative Medicines and Therapies
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NORD Submits Testimony on Biomarker Coverage in Nevada
Published: Mar 11, 2024
Tagged in: Access to Innovative Medicines and Therapies
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NORD Supports SB5821 in Washington to Protect Audio-Only Telehealth Services
Published: Mar 5, 2024
Tagged in: Telehealth
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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
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NORD Sends a Letter of Support for S.B. No. 175, An Act Concerning Funds for the CT RDAC
Published: Mar 5, 2024
Tagged in: Rare Disease Advisory Councils (RDACs)
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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
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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
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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
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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
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NORD joins leading patient and provider groups in urging Congress to act on telehealth
Published: Feb 22, 2024
Tagged in: Telehealth
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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
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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
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NORD Supports Access to Out-of-State Telehealth Providers for Coloradans with Support of SB24-141
Published: Feb 21, 2024
Tagged in: Telehealth
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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
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NORD is Proud to Support Rare Disease Advisory Council Bill HB2758 in Arizona
Published: Feb 7, 2024
Tagged in: Rare Disease Advisory Councils (RDACs)
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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
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NORD Supports HF2157 to Ensure Coverage of Biomarker Testing in Iowa
Published: Feb 5, 2024
Tagged in: Access to Affordable, Adequate Coverage
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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
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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
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NORD Opposes Newborn Exemption Bill in Nebraska
Published: Jan 30, 2024
Tagged in: Newborn Screening
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NORD Submits Written Testimony in Support of Biomarker Coverage in Hawaii
Published: Jan 30, 2024
Tagged in: Access to Innovative Medicines and Therapies
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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
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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
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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)
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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
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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
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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
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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
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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)
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NORD Submits Written Testimony in Support of Audio-Only Telehealth Services in Washington
Published: Jan 9, 2024
Tagged in: Telehealth
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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
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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
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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)
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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)
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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
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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
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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
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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
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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
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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
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The Orphan Drug Act at 40: Legislative Triumph and the Challenges of Success
Published: Dec 12, 2023
Tagged in: Orphan Drug Act
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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
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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
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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
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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
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