GRAND RAPIDS, Mich. (WOOD) — Helen DeVos Children’s Hospital will recognize patients and families with rare diseases Wednesday as part of Rare Disease Day.
A disease is considered rare when it affects less than 200,000 Americans. Many rare diseases are genetic and a number remain undiagnosed.
Rare Disease Day was first recognized nationally in 2008. Now, hundreds of thousands of people take part in the day. It is either held on Feb. 28 or Feb. 29, one of the rarest days of the year.
The hope of Wednesday’s event is to shine a light on rare diseases. Families who have personally dealt with rare diseases will be there to speak about what they have gone through.
Grand Rapids Mayor Rosalyn Bliss has made a special proclamation for Rare Disease Day that will be presented at the program.
“It can be very isolating to have a rare disease that no one else in the city, the state, even in this country has,” said Caleb Bupp, Spectrum Health medical geneticist. “Just sort of hearing that other families have been through what you have gone through or what you might go through gives people a sense that they are not alone in this.”
Bupp said a mother of one of his patients came up with the idea. The goal is to make it a yearly event.
The event will start at 10 a.m. Wednesday at the Balk Cafe inside Helen DeVos Children’s Hospital. The panel discussion with families will start at 10:10 a.m.
Helen DeVos Children’s Hospital will stream the event live on its Facebook page.
—–Online:Rare Disease Day: Helen DeVos Children’s Hospital