Get Support

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.

Who knows better about Gorlin syndrome than someone who has it?

You’ll get the support you need when you join our community of people affected by Gorlin syndrome. Whether you prefer talking face-to-face, by phone, email or online, the Gorlin Syndrome Alliance (GSA) offers a range of support programs for people with Gorlin syndrome and those who love them.

Talk with a peer

Who best to answer your questions about living with Gorlin syndrome than someone who also is affected by it?

The Gorlin Syndrome Alliance links people affected by Gorlin syndrome with a peer. Peers are members of the GSA community who have Gorlin syndrome and/or are caring for a loved one with the condition.

Whether it’s you who with Gorlin syndrome or someone you love, a GSA peer can help you with information, support and resources to understand the condition and stay healthy.

Gorlin Syndrome Alliance peers are available by phone, email or social media when you need them — whether to answer just a few questions or for ongoing advice and support.

Get connected to a GSA peer below.

Join us at our National Conference

Gorlin Syndrome National Patient Conference

It’s more than a conference: it’s a community

Every other year, people with Gorlin syndrome and their families gather from across the U.S. to learn about living with the disease.  

The Gorlin Syndrome Alliance National Conference is a weekend of learning, connecting and having fun. Conference topics include the latest information on:

  • Surgical and non-surgical treatments
  • Managing BCCs
  • Genetics
  • Eating right for Gorlin syndrome
  • Gorlin syndrome research
  • Helping a child with Gorlin syndrome
  • And more!

Sign up below to get announcements for the next GSA National Conference.

Meet others online

Get answers to your questions from the comfort of your computer when you join the Gorlin Syndrome Alliance closed (private) Facebook group.

Now more than 1,000 members strong, the GSA Facebook page is a private place to engage with others affected by Gorlin syndrome.