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Michigan Rare Disease Advisory Council

Michigan Rare Disease Advisory Council (MI-RDAC)

The Michigan Department of Health and Human Services (MDHHS) has established the Michigan Rare Disease Advisory Council (MI-RDAC) to support the rare disease community in the state. A rare disease is a condition that affects fewer than 200,000 people in the United States. There are more than 7,000 known rare diseases.

The MI-RDAC serves as an advisory body that provides Michigan's rare disease community with a stronger voice in state government. The responsibilities of the MI-RDAC include 1) providing information about rare diseases through a publicly available website, and 2) in collaboration with MDHHS, investigating and reporting to the state legislature about at least one rare disease per year. Meetings will be held quarterly, with virtual access available.

Announcements

February 28 is Rare Disease Day. The following events will gather patients, providers and researchers in support of the rare disease community in Michigan:

Applications to serve on the council are currently being sought to represent the following (one each):

  • Administration leadership from a Michigan-based hospital
  • Health insurer
  • Health maintenance organization
  • National pharmaceutical industry or a pharmaceutical company working in the area of rare diseases

To apply, refer to MI-RDAC Membership Application Information 2025 and complete the Application for Membership 2025. Submit your completed application form and your CV/resume to mdhhs-rarediseases@michigan.gov. Applications will be accepted through February 17, 2025.