Skip to main content

Living with Gorlin Syndrome

Find Help With Health Care

Gorlin syndrome is a complex and rare genetic disorder characterized by a variety of symptoms, including the development of multiple basal cell carcinomas, jaw cysts, and skeletal abnormalities.

Due to its rarity and the wide range of symptoms it presents, knowledge about its management is not widespread among health care providers. This can make it challenging for patients to find professionals who are familiar with the condition and can offer comprehensive care.

In this section, you’ll find detailed information on how to assemble a care team that is tailored to your specific health needs. This includes guidance on selecting specialists who are knowledgeable about Gorlin syndrome, coordinating care among different health professionals, and ensuring that you receive the most effective and personalized treatment plan possible.

Get Expert Advice

The more you know about Gorlin syndrome, the better equipped you will be to manage and understand this complex condition. By expanding your knowledge, you can make informed decisions about your health and treatment options.

To assist you in this journey, you can access a wealth of information through the GSA Online Magazine, which offers a variety of articles, research updates, and expert insights. Additionally, subscribing to the Newsletter will keep you updated with the latest news, tips, and personal stories from others living with Gorlin syndrome.

For a more interactive experience, consider attending the Gorlin Syndrome Alliance National Conference in person, where you can engage with healthcare professionals, participate in workshops, and connect with a supportive community.

With Gorlin syndrome, health care is a team sport and you’re the captain.