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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

January Newsletter
Gorlin Syndrome

January Newsletter

by Gorlin Syndrome Alliance
Discover the latest updates, research opportunities, and ways to get involved with the Gorlin Syndrome Alliance in our January newsletter. Join us in raising awareness and supporting the community.
December Newsletter
Gorlin Syndrome

December Newsletter

by Gorlin Syndrome Alliance
Reflecting on 2025, the GSA achieved significant milestones in research and collaboration. Your support can help us continue this momentum in 2026!
GSA Executive Director Featured on PeDRA Pearls Podcast
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GSA Executive Director Featured on PeDRA Pearls Podcast

by Gorlin Syndrome Alliance
GSA Executive Director Meredith Weiss discusses advocacy, research priorities, and patient collaboration on the PeDRA Pearls podcast. Listen to her inspiring journey and insights into Gorlin syndrome.