Featured keynote speakers will discuss the advances in genetic testing and treatment over the past few decades that have changed the rare disease landscape. Breakout sessions will provide opportunities to learn more about genetic testing, discover ways to support siblings of children with a rare diagnosis, learn strategies for coping with stress, connect with adults living with a rare diagnosis, and explore 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. From Bedside to Breakthrough: How Rare Disease and Genetic Testing Have Changed Over the Years
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 Coping with the Stress of Rare
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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