1 in 10 people in the United States has a rare disease. Spectrum Health, in partnership with Michigan State University College of Human Medicine and Calvin University recognize Rare Disease Day, shining the light on many patients and families who are touched by rare diseases, by hosting a symposium on Saturday, February 29.
The Rare Disease Day Symposium aims to bring members of the rare disease community—patients, caregivers and families, researchers, advocates, and students—together to learn from one another and to support one another. This year’s expanded program will include plenary sessions, a patient discussion panel and breakout sessions geared for patients, families, and anyone else who might be interested in rare diseases.
The event is free and open to anyone interesting in learning more about rare diseases. The Rare Disease Day Symposium will take place at Calvin University Prince Conference Center from 8 a.m. to 3 p.m.
Pre-register at onlineregistrationcenter.com/rarediseaseday2020.Registration closes on February 21.
Some of the biggest challenges families face when touched by a rare disease include:
- Lack of awareness
- Need for more research
- Financial challenges and insurance issues
- A sense of being “marginal”
There is no cure for most rare diseases; about 95 percent of diagnoses have no treatment available. In many cases rare diseases my go undiagnosed.