Gorlin Syndrome Alliance

01/28/2026

The GSA Natural History Study saw incredible growth in 2025—and 2026 is set to deliver even greater impact!

Learn more and enroll today at https://gorlinsyndrome.org/gsa-natural-history-study

01/27/2026

Dr. Andrea Rustad is a dermatology resident who is planning to specialize in pediatric dermatology, and has a special interest in genetic skin conditions. She has previously written a children’s book on ichthyosis, a group of rare genetic skin conditions, called Skin-Vincible, which has made a strong positive impact on the ichthyosis community. She believes strongly in the power of storytelling to help kids with rare conditions feel seen and positively represented. She has written a book on Gorlin syndrome and hopes to publish it this year. The input of those affected by Gorlin syndrome and their families is so important to make sure it authentically represents the experience and community, and she looks forward to getting your feedback on the book before it is published!

To receive the zoom link for this meeting, make sure you're on our mailing list: gorlinsyndrome.org/contact-us

01/05/2026

Register at: https://gorlinsyndrome.org/community-groups

Known as “Dr. Al” in the rare disease community, Dr. Freedman is a psychologist with both personal and professional insight into the emotional challenges that come with rare disease. We’re thrilled that he’ll be leading a series of community support sessions in 2026, creating a safe space for connection, understanding, and care.

Here’s what’s coming up first:

January 14 at 1 PM EST – for caregivers, parents, guardians, and partners
January 15 at 1 PM EST – for adults living with Gorlin syndrome

12/30/2025

One day left. One more chance to give. A year-end gift today helps ensure that momentum and hope continues into the year ahead.

Make your impact on the Gorlin syndrome community at gorlinsyndrome.org/donate

12/29/2025

Your support today creates momentum for everything we’re building in 2026.

Make your impact today at gorlinsyndrome.org/donate

12/25/2025

12/16/2025

Hope doesn’t happen by accident, it’s built by people who care.

Because of our community, the first-ever Clinical Practice Guidelines for BCCs in Gorlin syndrome were published.

Your gift helps create what comes next. ✨

Give today:
https://aabbnvua.donorsupport.co/page/GSAdonations

12/10/2025

For families living with Gorlin syndrome, the battle never pauses.

Neither can our progress.

Your year-end gift helps fuel the research that moves us closer to fewer surgeries, fewer disruptions, and a future without constant BCCs.

Give a gift that matters:

https://aabbnvua.donorsupport.co/page/GSAdonations

12/09/2025

Due to a very lagged connection we were unable to continue hosting the Facebook Live tonight. We will troubleshoot this issue and will reschedule for a date some time in the near future! Stay tuned for updates!

12/02/2025

There's still time to make a big impact today. Give today and fuel the momentum toward better treatments and a cure.

When you support the Gorlin Syndrome Alliance, you don’t just fund programs — you transforms care.

Because YOU, we now have the first-ever clinical guidelines for managing BCCs in Gorlin syndrome.

Providers everywhere can deliver evidence-based, consistent treatment.

Families finally have a tool to advocate for themselves.

This Giving Tuesday, help us build on this momentum and drive the research our community needs most.

https://aabbnvua.donorsupport.co/page/GSAdonations

12/02/2025

Your gift today strengthens and empowers the Gorlin syndrome community.

Make an impact now: https://aabbnvua.donorsupport.co/page/GSAdonations

12/02/2025

Today is Giving Tuesday! Join us in lifting up the Gorlin syndrome community. Every gift -big or small- helps us support families and fuel critical research. 💜

https://aabbnvua.donorsupport.co/page/GSAdonations