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MI-RDAC Meetings

The MI-Rare Disease Advisory Council will meet quarterly. Meetings will be open to the public.

First Quarterly Meeting
Wednesday, January 22, 2025

Agenda items:

  • Legislation updates
  • Presentation: Newborn Screening Overview
  • Member applications
  • Policies and procedures
  • 2025 Priorities
  • Public comments

Topic for Public Comments:
The council is soliciting comments from the public on the following topic: "Perspectives on Challenges and Possible Solutions for Accessing Care for Rare Patients."

Each participant will be given two minutes to speak. If you are interested in this opportunity, please email MDHHS-RareDiseases@michigan.gov with your name and a sentence about your planned topic. If preferred, you may also submit comments through email by 2:00 p.m. January 21, 2025.

Public comments will begin at 11:40 a.m. during the meeting.

Upcoming meetings

Date

Time Location Meeting Details
January 22, 2025 10:00 a.m. - 12:00 noon Virtual via MS Teams Email MDHHS-RareDiseases@michigan.gov on how to join.
April 30, 2025 10:00 a.m. - 12:00 noon TBD
July 23, 2025 10:00 a.m. - 12:00 noon TBD
October 8, 2025 10:00 a.m. - 12:00 noon TBD

 

Past Meetings

October 8, 2024. 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