Calvin will host its first virtual Rare Disease Symposium from Feb. 23 to Feb. 27. The symposium consists of weeknight lectures and discussions about issues affecting the rare disease community. A full-day slate of events will occur on Saturday, with sessions for patients, healthcare providers and students.
The Rare Disease Network, a new collaboration between Calvin’s Rare Disease Research and Support, Spectrum Health, and Michigan State University College of Human Medicine, sponsors the symposium. The event will include virtual lectures, discussions, information booths and chat rooms, as well as programming for kids.
Hosting the symposium virtually makes it more accessible. Biology professor and rare disease researcher Amy Wilsterman noted that out-of-state researchers, families, and patients have signed up to attend. “Families or patients who normally wouldn’t be able to attend due to the logistical challenges of some of these diseases are now able to participate,” Wilsterman said.
Attendees are more geographically diverse than in past years, when most attendees came from West Michigan. Approximately 280 households are registered to attend, including individuals from California, Florida and Canada.
“One of the goals of our event is to connect members of the rare disease community,” Wilsterman said. “That includes patients, family members, medical professionals, research scientists, advocates and students, especially students in the pre-health fields.”
The interdisciplinary nature of the symposium is essential. Wilsterman explained that rare disease patients often have difficulty acquiring a diagnosis and accessing appropriate treatment. They often conduct individual research in professional scientific literature about their disease.
By connecting researchers, current health professionals and patients, patients will be able to build networks for treatment, and researchers and health workers can tailor their services to the patients and families that receive them. “The diverse people involved in this project provide opportunities to best serve the needs of this community,” Wilsterman said.
Wilsterman noted that raising awareness for rare diseases among students in the pre-health fields has long been a goal of the rare disease program. “We hope that by connecting pre-health students to the rare disease community, students can learn more about them and be better able to treat these patients in the future,” she said.
Although each individual rare disease affects less than 200,000 people at any particular time, about 10 percent of people have a rare disease. That’s approximately 30 million people in the United States.
“We all know people who have rare diseases. Five or six people you know have one,” said Elle Hazlett, a senior strategic communications member who assisted with planning the symposium.
Hazlett herself is a rare disease patient. “It can be an isolating experience. Providing spaces like this symposium are important for building this community.”
“In medical school, students are taught to think of horses, not zebras, when they hear hooves” said Isabel Johnson, a senior biochemistry major and psychology student who works in Calvin’s rare disease lab. “The rare disease community has adopted the zebra as its mascot to show that there needs to be more education and awareness surrounding rare conditions.”
“I’ve attended every year since I was a freshman,” Johnson said. “I’ve always been amazed at the resilience of rare disease patients, some of whom may be in pain all day and never show it. They’re such strong people. It’s really inspiring.”
Attendance at the symposium is free but registration is required. Interested individuals can sign up at calvin.edu/events/rare-disease-network/.