Close Modal Public Event Rare Rebels™: The Human Side of Rare Disease Thursday, July 30 | 7:00pm Through a powerful curated film program and community dialogue, Rare Rebels™ reveals the innovation and partnership required to drive medical progress and the personal narratives that make that science matter. Member Ticket Presale: Starting June 4thGeneral Public Ticket Launch: June 11thWhat 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. Register for the Event Date and Time Thursday, July 30 | 7:00pm Audience Adults 18+ Location Blue Wing View Map Price Free with Pre-Registration Language English Register for the Event Date and Time Thursday, July 30 | 7:00pm Audience Adults 18+ Location Blue Wing View Map Price Free with Pre-Registration Language English Member Ticket Presale: Starting June 4thGeneral Public Ticket Launch: June 11thWhat 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. Featuring Rare Rebels™ Rare Rebels™ is a storytelling-driven movement dedicated to amplifying the voices of people living with rare diseases. Through film, photography, and narrative storytelling, the initiative captures authentic, everyday experiences to build awareness, foster empathy, and inspire action. Founded by filmmaker and advocate Melody Joy Paine, Rare Rebels™ uses creative media to humanize rare disease and connect patients, families, researchers, and advocates within a shared ecosystem. By elevating lived experience, Rare Rebels™ seeks to shift public understanding and drive meaningful change because awareness is the first step toward better treatments, stronger support systems, and lasting impact. At its core, Rare Rebels™ is built on the belief that storytelling can spark systemic change, uniting communities and empowering individuals to become “rebels” who challenge the status quo and help shape the future of rare disease care.
