Silvia Cerolini: A Mother’s Mission to Rewrite the Rules of Rare Disease Research

▤ Summary

Silvia Cerolini turned her daughter’s rare disease diagnosis into a global advocacy effort centered on patient-led research. Through Eyes on the Future, she has built a network of families, scientists, investors, and biotech partners to advance gene therapy for inherited retinal dystrophy. The organization has raised more than $6 million and pushes a model where patients help shape research priorities, trials, and treatment development from the start. The article also highlights her broader mission inside Sanofi to promote patient-centered innovation in healthcare. Overall, the piece argues that rare disease progress depends on new collaboration models rather than traditional market-driven assumptions.

▦ Linked Companies

EVERSANA

$50M to $100M