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Changing lives. Together. 


The mission of 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.

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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

April 2026 Newsletter
Gorlin Syndrome

April 2026 Newsletter

by Gorlin Syndrome Alliance
Stay informed with the latest updates from the Gorlin Syndrome Alliance in our April 2026 newsletter, featuring valuable information and ways to get involved.
March 2026 Newsletter
Gorlin Syndrome

March 2026 Newsletter

by Gorlin Syndrome Alliance
Stay informed with the latest updates from the Gorlin Syndrome Alliance in our March 2026 newsletter, featuring important information and ways to get involved.
February 2026 Newsletter
Gorlin Syndrome

February 2026 Newsletter

by Gorlin Syndrome Alliance
Discover the latest updates, research opportunities, and learn about Rare Disease Day with the Gorlin Syndrome Alliance in our February newsletter. Join us in raising awareness and supporting the community.