Every person affected by Gorlin syndrome has a unique experience—and every experience helps advance research.
Our Natural History Study (NHS) captures the real-world experiences of individuals and families living with Gorlin syndrome. By enrolling and completing surveys, you help researchers better understand the condition, improve care strategies, and identify opportunities for future discoveries.
The study reflects a diverse and growing community. Currently, 74% of surveys are completed by individuals with Gorlin syndrome, while 26% are completed by parents or legally authorized representatives. Both patient and caregiver perspectives are essential to building a more complete understanding of life with Gorlin syndrome.
Participation also extends beyond borders. Eighty percent of participants are from the United States, while 20% come from countries around the world. This global representation strengthens rare disease research by bringing together experiences from different healthcare systems, geographic regions, and communities.
Every survey completed adds to a growing body of knowledge that helps researchers, clinicians, and advocates better understand Gorlin syndrome. Whether you're living with the condition or caring for someone who is, your experience matters.
Join the Natural History Study today and help shape the future of Gorlin syndrome research.