Creating a community for those affected by rare disease

One in ten people is affected by a rare disease in some way, explained Rachael Baker, professor of chemistry and biochemistry at Calvin College. “Because there are 7,000 different rare diseases, everyone is probably going to know someone, a friend or family member with a rare disease at some point,” she said. “We want to raise awareness about what that looks like.”

Rare diseases and real stories

On March 3, 2018, Calvin and the Rare Disease Research Group will hold the first Rare Disease Symposium. This event will provide individuals the opportunity to learn about current research efforts in rare diseases that affect members of the local community. It will also allow local patients and their families to talk about living with rare diseases. February 28 and 29 is Rare Disease Day. Across the country on that day people gather to recognize rare diseases. “We wanted to have our symposium as close to rare disease day as possible,” said Baker.

“In West Michigan currently there does not seem to be any sort of rare disease community,” said Amy Wilstermann, biology professor. “There are families in the area that are affected by rare disease, people doing research on rare disease, medical professionals that are treating patients, and we have a lot of our students that are headed into medical professions. The goal of the Rare Disease Symposium is to bring all of these people together so that they can talk to one another and build some support networks and connect people to resources that they might not even be aware of.” 

A community for those affected by rare disease

“Rare diseases are very important for just understanding health and the human body, but we didn’t want our students to only think of them in that context," said Baker. “We wanted them to have a bigger vision for who is affected in this community and understand how can we speak to and minister to those people as we research.”

“Being sick is not a unique experience, but having a rare disease is," said Baker. “When you have a rare disease, you’ve probably never heard of it before, you probably don’t know anyone else who has had it before, your doctor has probably never even diagnosed it before.” In the case of one of the symposiums’ speakers, their child is the only person in the world who has this specific disease. Things like 'How will the disease progress as my child ages?' is an open question for many families.

“Because of those factors, it can take a long time to get a diagnosis, and once you get a diagnosis, it can feel very isolating,” said Baker. “But, there are some very common emotions and experiences that are shared by many families that are diagnosed with rare diseases even if they don’t have the same rare disease. We think it is important to help them gather together and meet each other.” 

A space to connect and learn

"Studying rare diseases is really important to me, because as a Christian I place a lot of importance on being a steward of all God's people, especially the ones who are in the minority," said Kalina Reese, a biochemistry and music double major, assisting in the symposium's planning. "This experience has made me seriously consider the availability of disability research and the importance of making public areas accessible to those with diseases and disabilities."

“I think the symposium fits into Calvin’s mission in a lot of ways,” said Wilstermann. “We are thinking about acting justly and living wholeheartedly.” In the rare disease community, because there are so many rare diseases that so few people have, there is not a big emphasis on research, she explained. “I think one of the ways we feel that we are living out the mission is seeking out some of those areas of God’s kingdom that are neglected and devoting time to them.

“We are hoping a lot of students attend the Rare Disease Symposium,” said Wilstermann. “Many will be working with people who are affected by rare disease at some point, and I would hope that they get a greater sense of the prevalence of rare diseases and understand the challenges, but also the resilience of some of these families at the event.”

“If someone comes in from the community who has a rare disease or is caring for someone that does, I hope they walk away from the symposium seeing Calvin as a new resource,” said Baker. “We are hoping the symposium will be the beginning of new relationships with a lot of community members affected by rare disease.”

The Rare Disease Symposium is free and open to the public. Attendees are encouraged to register for the event online.