Our Rare Disease Day Symposium started at Calvin University in 2018 and since then has expanded with partnerships from MSU and Spectrum Health. Our goal was to connect people from every aspect of our rare disease community through research, outreach, education, advocacy, and more. This year we connected online to protect our most vulnerable.
Our most recent symposium—hosted by Calvin University, Spectrum Health, and MSU—occurred on February 29th, 2020 at the Prince Conference Center. Over 350 people attended the symposium, featuring keynote speakers, breakout sessions, and resources for patients and families, as well as advocates.
“Working with those with rare diseases and having one myself, this symposium brought to light those who suffer the uncertainty that comes with looking for health care in a world where few know how to treat that disorder. This was enlightening both professionally and personally.”-Patient and Healthcare Worker, 2020
“It was an incredible experience where I go to meet people my age with rare diseases and also meet those who are interested in supporting it. I realized that the saying “we are rare, but we are strong” is more than true because we all can connect to others on a deeper level. Even without similar diseases, every person who has been diagnosed with a rare disease can relate to each other.”-Patient, 2020
“Being able to help lend a voice to the unheard and unseen is what our foundation is all about. The event not only impacted me as the COO of Avery’s Angels but as a mother and advocate for my own child who lives with the lasting impact and unknowns that come with being born rare.”-Mother and Vendor, 2020
“It was great to see the energy between all of the participants. It was clear that those with a direct connection to the rare disease community were able to see themselves in the stories of others.” -Educator, 2020
“I loved the combination of having health care professionals along with patients and families. This allowed for a very unique networking experience.”-Medical Professional, 2020
“I enjoyed connecting with other members of different rare disease communities and participating in an event that attempted to cater towards 7,000 possibilities.”-Caregiver, 2020
“I really like the variety of perspectives that was brought. There were doctors, patients, families, and researchers brought in for this event. It gave a really holistic view of the rare disease community.”-Student, 2020
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