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MI-RDAC Meetings

The MI-Rare Disease Advisory Council will meet quarterly. Meetings will be open to the public. Please email MDHHS-RareDiseases@michigan.gov for more information.

2025 Upcoming meetings

Date

Time Location Meeting Details
October 8, 2025 10:00am - 12:00 noon Virtual

To receive the meeting link and be added to our public listserv for future meeting notifications, please email MDHHS-RareDiseases@michigan.gov.

Public Comments: Input on MI-RDAC's Seven Workplan Priorities

  1. Continuity of Care and Access to Therapies
  2. Legislative Advocacy and Policy Development
  3. Information Accessibility and Community Engagement
  4. Insurance Coverage and Financial Barriers
  5. Patient and Family Engagement
  6. Organizational Development and Best Practices
  7. Equity in Healthcare

 

Past Meetings

July 23, 2025: The recording may be viewed here: MI-RDAC July 23, 2025 Meeting
Agenda:

  • Member Applications
  • Presentations: Insights from Other State RDACs (Pennsylvania & Minnesota)
  • 2025 Priorities, Workplan, and Workgroups
  • Public Comments: "The Human Impact of Medicaid Cuts on Michigan's Rare Disease Population".

April 30, 2025: Meeting Minutes and follow-up Meeting Minutes. The recording may be viewed here: MI-RDAC April 30, 2025 Meeting
Agenda:

  • Personnel Updates
  • Member Applications
  • Legislation Updates
  • Policies and Procedures
  • 2025 Priorities
  • Public Comments: "Michigan Rare Disease Advisory Council's 2025 Initiatives and Priorities".

January 22, 2025: Meeting Minutes. The recording may be viewed here: MI-RDAC January 22, 2025 Meeting
Agenda:

  • Legislation Updates
  • Presentation: Newborn Screening Overview
  • Member Applications
  • Policies and Procedures
  • 2025 Priorities
  • Public Comments: "Perspectives on Challenges and Possible Solutions for Accessing Care for Rare Patients."

October 8, 2024: Meeting Minutes. The recording may be viewed here: MI-RDAC October 8, 2024 Meeting
Agenda:

  • Introduction of Council Members
  • National Organization for Rare Disorders: Project RDAC
  • Overview of Michigan Bill Proposal
  • MDHHS Activities and Funding
  • MI-RDAC Leadership: Chair & Vice Chair
  • Council Policies and Procedures
  • Workplan and Implementation
  • Public Comments