Gorlin Syndrome Alliance

05/22/2026

Among 166 NHS participants with Gorlin syndrome, the lifetime burden of basal cell carcinomas (BCCs) was substantial. While a small number of participants reported no history of BCCs, many experienced hundreds — and in some cases more than 1,000 — tumors over their lifetime.

These findings highlight the significant clinical and psychosocial impact of Gorlin syndrome and highlights the importance of continued research and surveillance.

05/19/2026

Among 190 respondents, nearly 4 in 5 individuals with Gorlin syndrome reported having been diagnosed with at least one basal cell carcinoma (BCC).

These findings highlight the significant dermatologic burden associated with Gorlin syndrome and reinforce the importance of research to help patients and their families.

05/11/2026

The Women's Community Group meets tomorrow, 5/12, at 8PM EST on Zoom. Join the conversation and connect with others in the Gorlin syndrome community. Sign up now at:

gorlinsyndrome.org/community-groups

Next up: Our Parent's group meets on Thursday, 5/14, at 8PM EST and next week, join our group for adults affected by Gorlin syndrome on 5/21!

05/11/2026

Camp Wonder applications are due May 15, 2026!

Operated by the Children’s Skin Disease Foundation, Camp Wonder is a free, week-long summer camp for children ages 6–16 living with chronic skin conditions, including Gorlin syndrome.

📍 Rutledge, GA
📅 June 13–19, 2026
✈️ No cost to families- including travel

Camp Wonder gives children the chance to connect with peers who understand their experiences, build confidence, create lasting friendships, and spend time simply being kids — not patients.

The Gorlin Syndrome Alliance recently hosted a Town Hall sharing more about the camp experience and what families can expect. If you missed it, you can still watch the recording on our YouTube page: https://youtu.be/sf2xdIFKooQ

📝 Application deadline: May 15, 2026

Learn more and sign up at https://www.csdf.org/



Children's Skin Disease Foundation/Camp Wonder

Your donation is tax-deductible. To donate to a specific program, please write the name in the "special instructions" portion before checkout.

05/07/2026

Connection matters. The GSA Community Groups create a welcoming space for individuals and families affected by Gorlin syndrome to support one another through open, peer-led conversations.

Join us for our upcoming 2026 meetings:
💬 Women’s Group — Tuesday, May 12 at 8PM EST
💬 Parents Group — Thursday, May 14 at 8PM EST
💬 Affected Adults Group — Thursday, May 21 at 8PM EST

Register now through the GSA website to receive meeting details and updates: gorlinsyndrome.org/community-groups

Have an idea for a future community group? We’d love to hear from you: info@gorlinsyndrome.org

05/04/2026

Skin Cancer Awareness Month is a reminder to stay informed and take care of your skin.

For people with Gorlin syndrome, awareness and prevention are every day, lifelong priorities.

💜 Follow along this month as we share resources, tips, and stories.

05/01/2026

We’re kicking things off this month! Starting next week, we’ll begin growing our patient enrollment—month by month, survey by survey—as we build hope together.

We’ll be sharing updates along the way and celebrating our progress as we work toward our goal of a 20% increase in participants by year’s end. Stay tuned!
https://hubs.la/Q04f8nCM0

05/01/2026

Coming Up Soon!

Town Hall – May 3, 8PM EST on Zoom

We hope you will join us for our upcoming Town Hall. This quarter, we will focus on opportunities for children and families, including:

-A conversation with Camp Wonder about their summer program

-Updates on the Gorlin syndrome children’s book

-An introduction to our research roadmap consultant, Nicole Doudican, and how you can contribute

The zoom link will be emailed to everyone on our mailing list so make sure to sign up here:

gorlinsyndrome.org/contact-us

04/23/2026

Camp Wonder is now accepting applications for Summer 2026!

📅 June 13–19
📍 Rutledge, GA
👧🧒 Ages 6–16 with chronic skin conditions

Time at Camp Wonder gives kids a break from being “patients” and offers a week filled with friendship, confidence, and fun—completely free, including travel.

If your child could benefit from this experience, check out the Camp Wonder website, read the FAQs, and apply by May 15th.

https://www.csdf.org/camp-wonder

04/21/2026

One study. Two entry points. Whether you're a researcher seeking patient data or a patient/family ready to make an impact, the Gorlin Syndrome Alliance Natural History Study is built for you. Check it out!
https://hubs.la/Q04cTvJw0

04/14/2026

Gorlin syndrome affects people around the world. Collaboration across countries helps build momentum for better treatments and a deeper understanding of the disease.

In recent weeks, we’ve had the privilege of connecting with groups in Australia and Italy who are working to strengthen global impact for the Gorlin syndrome community.

We celebrate the work of regional organizations that bring patients together in ways that reflect local health systems, languages, and cultures.

If you’re part of an international Gorlin syndrome group, let us know in the comments where you’re based.