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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.

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Latest News

Ciliopathy Summit: Frontiers in Patient-Scientist Collaboration

Ciliopathy Summit: Frontiers in Patient-Scientist Collaboration

by Gorlin Syndrome Alliance
The Gorlin Syndrome Alliance will be at the Ciliopathy Summit to explore patient-scientist collaboration and advance research in Gorlin syndrome.
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SkinJect Clinical Trial Receives FDA

SkinJect Clinical Trial Receives FDA "Study May Proceed" Letter

by Gorlin Syndrome Alliance
Medicus Pharma's SkinJect clinical trial for Gorlin syndrome receives FDA approval to proceed, aiming to evaluate a new treatment for basal cell carcinomas.
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Connect with the Non-Melanoma Skin Cancer Community at the First Skin Cancer Champions Patient Advocacy Summit

Connect with the Non-Melanoma Skin Cancer Community at the First Skin Cancer Champions Patient Advocacy Summit

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.
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Contact Us

info@gorlinsyndrome.org

267-689-6443

 

Gorlin Syndrome Alliance

3005 S. Lamar Blvd D109-264

Austin, TX 78704

The Gorlin Syndrome Alliance is a 501 (c) (3) nonprofit organization.  (EIN# 34-1915691).

 

Join the GSA Community to find support, empowerment and hope. You are not alone.
 
Our mission: to thoughtfully support, comprehensively educate, and aggressively seek the best treatments and a cure for those affected by Gorlin syndrome.