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The mission of the Gorlin Syndrome Alliance is to thoughtfully support, comprehensively educate, and aggressively seek the best treatments and a cure for those affected by Gorlin syndrome.

You can help us invest in research that leads to better treatments and prevention of new symptoms while supporting and empowering everyone who lives with Gorlin syndrome.

Make a gift to the Gorlin Syndrome Alliance today. 

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Gorlin syndrome is a rare disease caused by a gene mutation that affects development before birth and tumor suppression in all organs of the human body throughout life.
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Newly Diagnosed

Resources are available to help and empower you as a patient or a caregiver.

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Natural History Study

Sharing your experiences can fuel discoveries and improve care. Help drive research.

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Find Community

You are not alone. Connect with a community of others who share your journey.

Latest News

Clinical Guidelines for BCCs in Gorlin Syndrome

Clinical Guidelines for BCCs in Gorlin Syndrome

by Gorlin Syndrome Alliance
Publication of the clinical guidelines for BCCs in Gorlin syndrome patients. These guidelines are now available to everyone.
November Newsletter 2025

November Newsletter 2025

by Gorlin Syndrome Alliance
Gorlin syndrome updates as of November 2025. Publication of the clinical guidelines for BCCs in Gorlin syndrome patients, mental health support for the Gorlin syndrome community. New Pharmaceutical partnership between Medicus and the GSA.