Medical
Professionals

The resources provided here are intended to familiarize healthcare providers, patients, parents and care partners with important considerations for managing Gorlin syndrome at all phases of life.

Management of  Gorlin syndrome centers on four areas of action: prevention, surveillance, monitoring and treatment. Not all people with Gorlin syndrome share the same set of symptoms, but caring for the disorder  may be similar. In this guide, you will learn important prevention, surveillance (follow-up care and monitoring symptoms), and considerations for patients with Gorlin syndrome. If you have additional questions, please seek individualized recommendations from your medical team. Healthcare providers and patients with questions are invited to contact the Gorlin Syndrome Alliance to obtain additional information and input.

Please visit our extensive library of syndrome related articles available here.

Individuals of all ages affected with Gorlin syndrome are prone to develop basal cell carcinomas throughout their lives. Click HERE for more information on prevention.

The signs and symptoms of Gorlin syndrome can develop and change over time.  It is important to establish a baseline for each symptom / manifestation in a person with GS.  Once the baseline tests and exams are complete, follow-up care or surveillance must continue. Information on proper surveillance can be found by clicking HERE.

Gorlin syndrome is a lifelong condition. It is important to work with your/your child’s care team to monitor signs and symptoms, and how they may change over time. Click HERE for more information on monitoring of Gorlin syndrome manifestations.

Many symptoms of Gorlin syndrome generally do not require treatment.  Other manifestations need close monitoring.   Different signs and symptoms of Gorlin syndrome require different treatments. Click HERE for information on treatment and the type of healthcare professionals to provide the care.