When her daughter was diagnosed with RDH12 Inherited Retinal Dystrophy, a rare genetic disease causing childhood blindness, Silvia Cerolini transformed a personal challenge into a global movement. Through Eyes on the Future, she built an international community spanning 20+ countries, raised millions, and united families, scientists, regulators, biotech, and nonprofits to accelerate research where industry had stalled.

Now, with a landmark co-development agreement and a Phase 1/2 trial on the horizon, Silvia is pioneering a new patient-led model of therapy development—rooted in joint decision-making, urgency and efficiency, diversified funding through philanthropy and venture, and innovative approaches that leverage patient data and AI.

In this keynote, Silvia shared how patients are not just informing drug development but co-creating it—reshaping the rare disease landscape and offering a blueprint for the future of patient-driven, personalized medicine. Her story is both a call to action and an invitation: to rethink how treatments are developed and to join a movement that puts patients at the center of innovation