Gorlin Syndrome Alliance

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.

04/14/2026

A new name and a new look. What hasn’t changed? You lead the way. Your data is secure. Research is the priority. Global and GDPR-compliant. The Natural History Study is built by and for the Gorlin syndrome community around the world. Join today https://hubs.ly/Q04bZlG60

04/13/2026

Last week, we shared a film about the realities of living with Gorlin syndrome.

This week, we’re continuing that conversation.

🔬 Our new video explores the role clinical trials play in advancing research, with insight from dermatologist Dr. Anokhi Jambusaria on how studies are conducted and how participants are protected.

Clinical trials can feel complex and personal—but they are a critical part of discovering new approaches to care.

💬 This film is also a thank you to to those who have or are contributing to clinical trials. Your contributions matter.

💜 Together, we move closer to better options for the future.

https://youtu.be/n6Na7j0UkG0?si=ZJCOJsJavpaDi4h-

04/10/2026

Our first short film is out - don't miss it! 🎬

Created with members of our community, this short film captures our voices, our experiences and our hopes for the future.

If you haven’t watched it yet, now’s the time.

https://youtu.be/M5L9lONziq4?si=gTSOqBJlxs_pW6RH

And mark your calendar 👀
Film #2 drops Monday.

04/08/2026

Earlier this year, members of our community teamed up with a dermatologist and filmmaker to create two short films capturing the real impact of Gorlin syndrome. The first one is now live.

We are beyond grateful to those who shared their stories so openly. This is powerful.

Watch now 🎬

https://youtu.be/M5L9lONziq4?si=JpjNsvugfla5CWOb

04/07/2026

It’s official! The Natural History Study (NHS) —formerly the Patient Registry (GSAPR)— is now live! While the GSA is based in the United States, Gorlin syndrome affects people across the globe. The GSA supports an international natural history study for Gorlin syndrome to help scientists and clinicians worldwide better understand the disease.

Together, we can improve understanding of this rare disease, and advance what is possible for all of us.

Let us know in the comments where you are from!

04/07/2026

Reminder: Thursday, 4/9, the GSA Support Group for Adults living with Gorlin syndrome will meet with Dr. Al Freedman at 1PM EST.

Make sure to sign up to attend here:

Welcome! You are invited to join a meeting: GSA Affected Adults Support Group with Dr. Al Freedman. After registering, you will receive a confirmation email about joining the meeting.

04/07/2026

Reminder: Tomorrow, 4/8, the GSA Caregivers Support Group with Dr. Al Freedman meets at 1PM EST.

Make sure to sign up to attend here:
https://us06web.zoom.us/meeting/register/QYJ2yKAnQ4yk4qkpw-8hxw #/registration

03/31/2026

We cannot wait for you to see this!

Earlier this year, members of our community joined a dermatologist and filmmaker to create two short films about Gorlin syndrome... and they’re something special.

Thank you to those who shared their stories with honesty and courage.

The first film is coming your way early next week 🎬

03/27/2026

The GSA started the day by connecting with dermatology professionals over breakfast at , sharing insights and building relationships 💜

These moments of connection help move our mission forward!

From left to right: GSA Executive Director Meredith Weiss, Dr. Elena Hawryluck, Dr. Anohki Jambusaria, Dr. Andrea Rustad (not pictured: Julie Breneiser and Dr. Joyce Teng)

American Academy of Dermatology

03/26/2026

Gorlin syndrome is rare. But when we come together? We are impossible to ignore. Coming soon...we'll be sharing something new & improved to amplify your voice in research.