The 2025 event will be held on Saturday, February 22. To receive additional information about the event and to be notified when event registration opens (closer to the date of the event), please click the Keep Me Posted button found below.
Featured keynote speakers will discuss how medical care and research around rare disease is evolving and improving and the state of rare disease in Michigan. Breakout sessions will provide opportunities for attendees to learn more about navigating insurance and finances, recent advances in research, therapy services, and rare disease-focused careers.
Throughout the day, there will be opportunities to explore informational tables related to rare disease as well and connect with others in the rare disease community.
9:00 a.m. Registration, Informational Tables and Research Posters 9:45 a.m. Welcome 10:00 a.m. How Medical Care and Research around Rare Disease is Evolving and Improving 11:00 a.m. Break 11:15 a.m. Breakout Sessions 12:00 p.m. Lunch and Networking 12:30 p.m. Breakout Sessions 1:15 p.m State of Rare Disease in Michigan 2:15 p.m. Rare Disease Research Poster Presentations
It was a joy to be back in person in 2023 talking about what’s next in rare disease research and treatment and what’s next in supporting the mental health of patients and caregivers.
Visit our page to engage with our featured content from the event this year.
This year we connected online to protect our most vulnerable.
Our first 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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