Gorlin Syndrome Alliance

10/10/2026

Living with Gorlin syndrome can affect much more than physical health. The demands of appointments, procedures, caregiving, and uncertainty can take an emotional toll on individuals and families.

On World Mental Health Day, we want our community to know that you do not have to carry these experiences alone. 💜

Our upcoming sessions with Dr. Al Freedman along with our November Community Groups will provide supportive spaces for adults living with Gorlin syndrome and for caregivers.

Learn more and register: https://gorlinsyndrome.org/community-groups

Join GSA's virtual community group meetings to connect, share experiences, and find support for Gorlin Syndrome. Register now for the upcoming sessions.

10/09/2026

The GSA community is getting the band back together in Nashville! 🎶

Whether you are reconnecting with longtime friends or attending for the first time, the GSA Conference is a chance to learn, connect, and be part of a community that understands.

Join us June 24 through 27, 2027.

Register: https://hubs.la/Q04zkF430

10/08/2026

Registration is open for our upcoming community support sessions with Dr. Al Freedman.

Adults living with Gorlin syndrome: October 28th at 1PM EST

Parents, caregivers, guardians, and partners: October 27th at 1PM EST

Join us for a supportive conversation and connection with others who understand.

Meetings are held on Zoom. Register: https://hubs.la/Q04zkbyf0

10/07/2026

Living with Gorlin syndrome often means much more than managing occasional appointments.

When participants in the NHS were asked about healthcare visits over the past year, 42% reported seeing a doctor, nurse, or other healthcare professional 10 or more times. In contrast, only 5% reported having no visits or just one visit during the year.

These data highlight the ongoing medical care many individuals with Gorlin syndrome require and reinforce the importance of research that aims to improve care, reduce disease burden, and advance new treatment options.

Every participant helps us better understand the real-world impact of Gorlin syndrome. Enroll today! https://hubs.la/Q04zxD4t0

10/06/2026

An important reminder for our community: superficial radiation therapy (SRT) should not be used to treat basal cell carcinomas in people with Gorlin syndrome.

Read the memo from the GSA’s Medical and Scientific Advisory Committee and share it with your healthcare providers. 💜

Read the memo: https://hubs.la/Q04zk9rN0

10/05/2026

One week to go!

Golf for the GSA takes place Monday, October 12.

We are excited to share that this event is now sold out but you can still make a donation to support programs, resources, and research for the Gorlin syndrome community.

gorlinsyndrome.org/golfdonation

09/25/2026

🎸 You don’t have to play an instrument to join this band.

Our band is made up of individuals with Gorlin syndrome. Parents. Kids. Caregivers. Families. Friends.

Some have known each other for years. Others will walk into a GSA Conference for the very first time.

But when we all get together? That’s when the magic happens.

Come find your place in the GSA community in Nashville.

Register early and join the band: https://hubs.la/Q04xnGzN0

09/24/2026

What is NHS data telling us about jaw cysts?
· 73% of participants who responded have experienced jaw cysts (OKCs).
· 78% experienced their first by age 20.
· 57% have experienced five or more.

These numbers represent real experiences with Gorlin syndrome—and help us show researchers the significant and often early burden of jaw cysts. Your data is helping tell the story.

09/23/2026

For people with Gorlin syndrome, cancer can be a repeated part of life. Some individuals develop hundreds or even more than 1,000 basal cell carcinomas over their lifetime, often requiring ongoing surveillance and treatment.

On World Rare Cancer Day, we are raising awareness of this extraordinary cancer burden and the urgent need for better options. The Gorlin Syndrome Alliance remains committed to advancing research that can lead to fewer cancers, less invasive treatments, and a better future for our community. 💜

09/22/2026

Golf for the GSA is less than three weeks away!

There is still time to register to join in on the fun on October 12th! Your participation helps strengthen our work for the Gorlin syndrome community.

Register or donate: https://hubs.la/Q04xV9SM0