Your Story Matters

We are stronger and our voices are louder, together. 

Whether you’re a patient, caregiver, family member, or friend, we invite you to tell your Gorlin syndrome story. Together, our stories reveal the impact of Gorlin syndrome across lives, and the strength we have built as a community.

Tell us how Gorlin syndrome has affected your life, what you hope for, how the GSA has been part of your journey and what or who gives you strength. 

Selected stories may be featured on our website, in newsletters, or during awareness campaigns to help raise visibility for the Gorlin community.