Community Groups

You are not alone.

One of the challenges of any rare disease is managing the mental health impact on individuals and families. Navigating the healthcare system, as well as the daily reality of the disease, can be stressful or isolating. Finding community with others who share some of your experiences can be empowering. The GSA facilitates opportunities for people to interact with others who understand the emotional and physical aspects of Gorlin syndrome. Participants in these groups often find healing in this space where they are understood. Support groups, community groups and our Town Halls are hosted virtually, so you may access them from the comfort of your home.

GSA Support Groups

These support groups are facilitated by a professional psychologist who focuses on the mental health impact of rare disease. Dr. Al Freedman. The GSA will host two groups, one for adults living with Gorlin syndrome and one for caregivers, parents, guardians and partners.

Please subscribe to our newsletter to receive notifications about meeting dates and times groups in 2026.

Upcoming Support Group Dates:

April 8th at 1 PM EST – Support Group for caregivers, parents, guardians, and partners
April 9th at 1 PM EST – Support Group for adults living with Gorlin syndrome

The GSA also offers quarterly community group meetings! These are peer-led groups, with an open discussion format. This invaluable opportunity helps you build connections with others who truly understand the emotional and physical aspects of Gorlin Syndrome.

Please see below for the 2026 dates and sign up for community groups by using the "register now" button. If you would like to suggest a new community group, you may email us at info@gorlinsyndome.org

All dates are subject to change based on moderator availability and event determinations – please register and subscribe to our newsletter to make sure you receive updates and notice of any changes. Meetings at held at 8PM EST unless otherwise noted.

First Community Group Dates for 2026: