Rare Disease Day 2026: Rare Today, Resilient Always
Calvin University | Prince Conference Center | Saturday, February 21, 2026
9:00 a.m. Registration and Informational Tables
9:45 a.m. Welcome
- TBD, Calvin University
- James Moses, MD, Chief Clinical Officer, Corewell Health
- Keith English, MD, Professor and Chair, Department of Pediatrics and Human Development, Michigan State University College of Human Medicine
- Heide Rollings, MD, Child, Adolescent, and Adult Psychiatrist, Pine Rest Christian Mental Health Services
- Jonathan Licht, MD, President and Chief Scientific Officer, Van Andel Institute
10:00 a.m. Rare Disease Advisory Council (RDAC)
This session will feature two current members, Dr. Caleb Bupp and Dr. Daniel Vogt, who will share more about Michigan’s RDAC, its work in 2025, and goals for the future.
- Caleb Bupp, MD, FACMG, Division Chief, Medical Genetics and Genomics, Corewell Health and Helen DeVos Children’s Hospital
- Dan Vogt, PhD, Associate Professor, Pediatrics and Human Development, Michigan State University College of Human Medicine
10:45 a.m. Break
11:00 a.m. Navigating Rare Disease in Uncertain Times Panel Discussion
Explore strategies for managing care, accessing resources, and building support networks.
Moderator: Carrie Graveel, PhD, Senior Research Scientist, Cell Biology, Van Andel Institute and Assistant Dean for Student Research Experience, Van Andel Institute Graduate School
- Phil Yeiter, Senior Director, Government Relations, Corewell Health
- Sophie Townsend, Child Life Specialist, Corewell Health
Keeping The Momentum in Rare Disease Research Panel Discussion (Beginner)
Learn about the latest advancements, ongoing studies, and how to stay engaged in the research community.
- Amy Wilstermann, PhD, Professor, Biology and Director, Honors Program, Calvin University
Career Opportunities in Rare Disease Panel Discussion
Connect with professionals/organizations making a difference and explore ways to contribute to this impactful field.
Moderator: Karena Moleakunnel, Student, Calvin University
- Luke Schipper, Student, Michigan State University College of Human Medicine
- Kelsey Woolner, PhD, Pediatric Neuropsychologist, Pine Rest Christian Mental Health Services
- Christine Bergeon Burns, MS, PhD, CGC, Clinical Genetic Counselor, Division of Medical Genetics and Genomics, Corewell Health
- Jamie Grit, PhD, Postdoctoral Fellow, Department of Cell Biology, Van Andel Institute
11:45 a.m. Lunch
Table Moderators: Shannon Bennett and Dan Vainner, Rare Disease Parents
12:30 p.m. Breakout Sessions (Repeated)
Keeping The Momentum in Rare Disease Research Panel Discussion (Intermediate)
Moderator: Amy Wilstermann, PhD, Professor, Biology and Director, Honors Program, Calvin University
- Xiaopeng Li, PhD, Associate Professor, Pediatrics and Human Development, Michigan State University College of Human Medicine
- Jeremy Prokop, PhD, Data Science Advisor, Corewell Health; Adjunct Assistant Professor, Pharmacology and Toxicology, Michigan State University College of Human Medicine
- Bart Williams, PhD, Director, Core Technologies and Services; Professor, Department of Cell Biology, Van Andel Institute
- Charles “Chuck” Williams, PhD, Assistant Professor, Department of Medicine, Michigan State University College of Human Medicine
1:15 p.m. Break
1:30 p.m. Adult Rare
Moderator: Laura Bedinger, Genetic Counselor, Corewell Health
- Kyle Friar, Individual living with Duchenne Muscular Dystrophy
- Tiffany Strand, Individual living with Neurofibromatosis
2:15 p.m. Rare Disease Research Posters and Lightning Talks
Moderator: Bart Williams, PhD, Director, Core Technologies and Services; Professor, Department of Cell Biology, Van Andel Institute
4:00 pm. Adjourn