Rare Disease West Michigan - Events

2025 Rare Disease Day Gathering

The Rare Disease Network, which includes Calvin University, Corewell Health Helen DeVos Children’s Hospital, MSU College of Human Medicine, Pine Rest Christian Mental Health Services and Van Andel Institute, will host its 6th annual Rare Disease Day Saturday, February 22, 2025, from 9 a.m. to 4 p.m., at the Prince Conference Center on Calvin University’s campus.

This free event will bring together people with rare diseases, caregivers and families, medical professionals, researchers, advocates and students to share knowledge and experiences, while encouraging and supporting one another.

Register Here

Theme: Bridging the Gaps

Featured keynote speakers will discuss how medical care and research around rare disease is evolving and improving and the state of rare disease in Michigan. Breakout sessions will provide opportunities for attendees to learn more about navigating insurance and finances, recent advances in research, therapy services, and rare disease-focused careers.

Opportunities to Connect

Lunch will be provided. In addition to hearing from keynote speakers and attending breakout sessions, participants will have the opportunity to engage with one another and visit information tables hosted by various advocacy and service organizations.

Schedule

9:00 a.m.     Registration and Informational Tables
9:45 a.m.     Welcome 
10:00 a.m.   Keynote: State of Rare Disease In Michigan
11:00 a.m.    Break 
11:15 a.m.      Breakout Sessions
                             Navigating Insurance and Finances
                             Therapy Services
                             Recent Advances in Rare Disease Research
                             Rare Disease-Focused Careers
12:00 p.m.   Lunch (free!)
12:30 p.m.   Breakout Sessions Repeat
1:15 p.m       Keynote: Evolution of Rare Disease Research and Medical Care
2:15 p.m.     Rare Disease Research Lightening Talks and Poster Session
4:00 p.m    Adjourn