Rare Disease Advocacy in Michigan
Rare disease advocacy in Michigan is critical to improving access to diagnostics, treatment, and coordinated care. Because key healthcare decisions are made at the state level, strong local advocacy helps ensure better coverage, resources, and outcomes for the rare disease community across Michigan.
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State Organization
Name: Michigan Rare
Website: https://mi-rare.org/
Contact: Kortney Lee, Co-Founder; Leslie Baldwin, Co-Founder and President
Email:
U.S. Congress Scorecard
See how Michigan’s Members of Congress are supporting the rare disease community with this Legislative Scorecard.
RARE Disease Advisory Council
An Advisory Council was established in 2024.
See more information on established rare disease advisory councils.
Rare Disease Caucus
Current Bipartisan Rare Disease State Legislative Caucuses.
Don’t see your state? If you would like to be part of the process to start a rare disease state caucus, please reach out at advocacy@rareadvocates.org.
Newborn Screening in Michigan
Newborn screening programs vary widely by state, leading to disparate health outcomes. While some states screen for thirty diseases, other states screen for over sixty.
RARE Young Adults
RARE Young Adults brings together motivated members of the rare disease community, ages 16–30, to build confidence, strengthen advocacy skills, and create meaningful impact in public policy.
Michigan Advocacy Resources
Insurance Commissioner
- Anita Fox
DIFS-Info@michigan.gov
Department of Insurance
Board of Pharmacy Executive Director
- Amy Gumbrecht, Director – Bureau of Professional Licensing
BPLHelp@michigan.gov
Health and Human Services
- Michigan Medicaid
- Meghan Groen
groenm2@michigan.gov
Department of State Health Services
State Legislature Calendar
- State Legislature in Session – Click here
- Which Dates is Your State Legislature in Session – Click Here
State Legislature Website
Drug Utilization Board or P&T Committee
- Drug Utilization Review Board Website:
Michigan Drug Utilization Review Board Committee - Meeting Schedule:
Meets quarterly (check website for schedule of meetings). - Contact:
Contact information
Established DUR Boards and P&T Committees
