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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

Reflections on the Rare Drug Development Symposium

Reflections on the Rare Drug Development Symposium

by Gorlin Syndrome Alliance
Join the inaugural Patient Advocacy Summit by Skin Cancer Champions on October 30, 2026, in Boston to connect and learn about non-melanoma skin cancers.
UV Protective Film – Research Survey

UV Protective Film – Research Survey

by Gorlin Syndrome Alliance
Join the inaugural Patient Advocacy Summit by Skin Cancer Champions on October 30, 2026, in Boston to connect and learn about non-melanoma skin cancers.
Nationwide Study Reveals New Insights into Gorlin Syndrome
Research

Nationwide Study Reveals New Insights into Gorlin Syndrome

by Gorlin Syndrome Alliance
Explore an innovative plant-derived supplement that may enhance UV protection for those with Gorlin syndrome, complementing traditional sun safety measures.