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Rare Disease Day

  • Saturday, March 3, 2018
  • 8:15 AM–11:30 AM

1 in 10 people in the United States have a rare disease. Come connect with others who are interested in or have been impacted by rare diseases to hear about current research efforts in rare diseases and to hear stories from local families about living with rare diseases.

Interested in attending?

All are welcome! The event is free, but please fill out the registration form so we know to expect you.


You can also send us an email at if you have additional questions or comments.

Event Details

The event will be held at the Prince Conference Center (directions can be found here).

8:15        Breakfast, Visit Resource Tables
8:45        Opening Remarks by Drs. Baker & Wilstermann (Rare Disease Research)
8:50        Family Story: Usher Syndrome
9:15        Speaker: Dr. Paul Mark (Spectrum Medical Genetics)
9:40        Family Story: Mitochondrial Complex III Deficiency
10:05     Coffee Break, Visit Posters, Visit Resource Tables
10:25     Speaker: Dr. Jeff MacKeigan (MSU)
10:50     Family Story: Microdeletion and Advocacy
11:15     Closing Remarks

Interested in connecting?

We are interested in hearing from patients, families, doctors, and social workers that would like to share their experiences related to rare diseases. Send us an e-mail at and we will be happy to follow up with you.

More about us

The Rare Disease Research group at Calvin college is committed to better understanding the molecular basis of rare diseases to inform potential treatments and therapies and increase the availability of information for patients and their families affected by rare diseases.

Learn more about the the current research project of the Rare Disease Research group: Molecular Basis of GRACILE Syndrome, Bjornstad Syndrome, and Complex III Deficiency

Read more about the project.


March 2018
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