Gorlin Syndrome Alliance

02/26/2026

Parents of K–5 students, this one’s for you! 🦓

This Rare Disease Day, kids can help raise awareness of Gorlin syndrome by:

🦓 Wearing stripes
🎨 Sharing our GSA printables for kids
📣 Talking to a friend, classmate or family member about Gorlin syndrome

Big awareness can start with small voices. Show the world rare matters.

Visit: gorlinsyndrome.org/rare-disease-day to access more youth resources for RDD including our GSA kids printables!

02/25/2026

Your Story Matters.

As Rare Disease Day approaches, we’re inviting members of the Gorlin syndrome community to share their stories.

-What has your journey looked like?
-What do you wish more people understood?
-What gives you hope?

When you share your experience, you:
💜 Help others feel less alone
📣 Raise awareness about Gorlin syndrome
🧬 Strengthen the case for research and support

Rare is powerful. And your story could be exactly what someone else needs to hear. Share now at:

gorlinsyndrome.org/share-your-story

02/24/2026

On Rare Disease Day, we wear stripes to raise awareness for the 300 million people worldwide living with a rare disease.

Will you show your stripes with us?

Here’s how to participate:
🦓 Wear stripes on 2/28
📸 Post a photo
🏷 Tag us
📣 Challenge 3 friends to join you!

Let’s fill social media with Gorlin syndrome awareness.

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!