Rare Rebels™: The Human Side of Rare Disease

What if the best way to understand science… is through story?

Join us in the Blue Wing for a powerful and deeply human evening with Rare Rebels™, a storytelling-driven program that brings the lived experience of rare disease into focus through film and conversation.

Rather than beginning with clinical definitions or data, this program invites audiences into the world of rare disease through personal narratives—revealing the resilience, uncertainty, and hope that shape everyday life for patients and families. Through a curated series of short films, each moment builds on the last, tracing a journey from individual experience to a broader understanding of the scientific, medical, and collaborative systems that drive progress.

The evening unfolds as a journey—from individual experience to a broader understanding of the scientific, medical, and collaborative systems working to drive progress. These stories illuminate not only the challenges of living with rare diseases, but also the innovation, creativity, and partnership required to advance treatments.
Designed to be emotionally engaging, accessible, and thought-provoking, this program welcomes all audiences—whether you are new to rare disease or deeply connected to it.

By the end of the evening, you’ll leave with a deeper understanding of the human stories behind scientific progress—and a clearer sense of how awareness, empathy, and collective action can help shape a more connected and compassionate future.