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Rooted in Community. Driven by Hope.

At the Gorlin Syndrome Alliance, we believe that connection is powerful and patient voices lead the way. Through support, science, and shared strength, we are building a better future- one filled with understanding, compassion, and progress.

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Assisting Patients and Researchers to Find A Cure

Patient Support

Support for Gorlin Syndrome patients includes resources, personalized care, educational materials, support groups, treatment plans, financial aid, counseling, and advocacy. 

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Physician Support

Physician support for Gorlin Syndrome is essential, encompassing specialized training, professional networks, and access to the latest research, to ensure comprehensive patient care and improved outcomes.

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Volunteer

Volunteering to help people with Gorlin Syndrome offers a unique opportunity to support research, raise awareness, and find a community dedicated to improving the lives of those affected by this rare genetic condition.

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About Us

The Gorlin Syndrome Alliance, formerly the BCCNS Alliance, evolved from the humble efforts of three determined patients and their desire to connect with others who had the same rare syndrome. It was through a series of cascading connections, referrals, and sheer compassion to help other Gorlin syndrome patients that this one-of-a-kind and invaluable organization was born.

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Research

Learn more about our work to find better treatments and a cure for Gorlin syndrome.

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Living Well

Get the info you need to best manage the signs and symptoms of Gorlin syndrome.

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Caring For Children

Help your child with Gorlin syndrome grow and thrive through all their ages and stages.

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Signs and Symptoms

Learn the different signs and symptoms of how Gorlin Syndrome may affect you.

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Medical Professionals

Explore essential resources to help manage Gorlin syndrome at every stage of life. Whether you're a healthcare provider, patient, or caregiver, this guide covers key areas like prevention, surveillance, and treatment to ensure comprehensive care. Every journey with Gorlin syndrome is unique, but our actionable insights and expert guidance can support you along the way. Dive into our detailed library of articles for more information, or reach out to the Gorlin Syndrome Alliance for personalized support.

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Connect To Others With Gorlin Syndrome

If you’re affected by Gorlin syndrome, talking to someone who has been there can help you better understand and manage your condition. In fact, research shows that when people talk with others who share their diagnosis, their health improves.

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Face-to-Face, by Phone, or Email

Talk with a peer

Meet others online

Connect with The GSA

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Living with Gorlin Syndrome

Gorlin syndrome is a complex and rare disease and knowledge about its management is not widespread among health care providers.

Living with Gorlin syndrome can be challenging. We’ve created the following resources to help people with Gorlin syndrome live well and thrive.

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Research & Science

Searching for better treatments and a cure for Gorlin syndrome.


The work of Gorlin Syndrome Alliance is focused on advancing research that leads to better treatments and a cure for Gorlin syndrome. Research is fundamental to our mission and the Alliance is 100% committed toward this effort.

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