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MI-RDAC Members

Who We Are

The MI-RDAC consists of up to 18 individuals, representing balanced and diverse perspectives that help ensure the greatest impact toward evidence-based solutions to challenges in the rare disease community.

Applications 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 the MI-RDAC Membership Application Information 2025Application 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.


The Council

Elizabeth Ames, MD, PhD Physician
Katie R. Baughman, MD, MA, FAAP Medical Ethicist
Laura Bonnell (Vice Chair) Parent
Caleb Bupp, MD, FACMG Physician
Michael Chesney Parent
Sean Doerr Individual with Rare Disease
Donna Hanson-Spencer, MBA, PACS Individual with Rare Disease
Tyler James, PhD, MCHES Epidemiologist
Susan Lerch Patient Organization Representative
Kelly Keener, MS, CGC Genetic Counselor
Kristen Kingzett, MD Individual with Rare Disease
Marissa Penrod Patient Organization Representative
Stephen Rapundalo, PHD (Chair) Biopharmaceutical Industry Representative
Daniel Vogt, Ph.D. Rare Disease Researcher
Michelle Whalen, RN, DNP, NNP-BC, CNE Nurse

 

MDHHS Staff

Dominic Smith, MSA (Manager, Public Health Genomics Section)

Amber Abram, MS, MPH (Coordinator, MI-RDAC)

Kerri-Lynn Lockwood, MS, CGC (NBS Genetics Specialist)