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 Quick Reference Guide: CMS IFR for Medicaid Community Engagement Requirements (CMS-2454-IFC)
Published: Jun 4, 2026
Tagged in: Medicaid Engagement Requirements
NORD Releases Rule Analysis: CMS IFR for Medicaid Community Engagement Requirements (CMS-2454-IFC)
Published: Jun 3, 2026
Tagged in: Medicaid Engagement Requirements
NORD Joins Coalition of 48 Patient Advocacy Organizations Expressing Concerns Over Coverage Loss Under Final CMS Medicaid Work Requirements
Published: Jun 3, 2026
Tagged in: Medicaid Engagement Requirements
NORD Sends Letter to Governor Scott: Vermont Rare Disease Advisory Council Signature (H.46)
Published: May 7, 2026
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD Delivers Testimony to Vermont Senate Health and Welfare Committee for Mark Up: RDAC Legislation (H46)
Published: Apr 8, 2026
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD Leads Patient Advocacy Coalition Sign-On: Vermont RDAC Legislation (H46)
Published: Mar 16, 2026
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD Issues Memo of Support: Vermont Rare Disease Advisory Council Legislation (H46)
Published: Mar 16, 2026
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD Sends Updated Policy Letter to Vermont House Chair: Short-Term Limited Duration Insurance (H585)
Published: Mar 11, 2026
Tagged in: Short-Term, Limited-Duration Health Plans and Association Health Plans
NORD Delivers Testimony to Vermont Senate Health and Welfare Committee: RDAC Legislation (H46)
Published: Feb 19, 2026
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD Sends Letter to Vermont House Health: Short-Term Limited Duration Insurance (H585)
Published: Feb 18, 2026
Tagged in: Access to Affordable, Adequate Coverage
Short-Term, Limited-Duration Health Plans and Association Health Plans
NORD Letter to Northeast Public Health Collaborative on State RDAC Resources
Published: Sep 23, 2025
Tagged in: Access to Diagnostics
COVID-19
Emergency Medical Services
Newborn Screening
Public Health
Rare Disease Advisory Councils (RDACs)
NORD Issues Letter of Support for Vermont H.46 (Stone) to Establish the Vermont Rare Disease Advisory Council (RDAC)
Published: Jan 29, 2025
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD Responds to Proposed Amendments Offered by Health Plans to Step Therapy Provisions of Vermont H.766 (Black)
Published: Apr 18, 2024
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
Access to Innovative Medicines and Therapies
Utilization Management
NORD Sends Letter of Support to Vermont Senate Health for H.766 Relating to Step Therapy Reforms
Published: Mar 27, 2024
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
Access to Innovative Medicines and Therapies
Utilization Management
NORD Sends Letter of Support to the Vermont House 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
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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