Gorlin Syndrome Alliance

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.

03/25/2026

Scholarship opportunity now available!

The Scholarship Fund was created to help adults living with rare diseases pursue their educational goals. Apply by April 28th at 2PM EST.

🔗 Learn more:

The EveryLife Foundation for Rare Diseases has established the Scholarship Fund to help adults with rare diseases in a variety of educational pursuits, regardless of treatment status.

03/21/2026

We’re proud to share that Julie Breneiser, Director of Pharmaceutical Relations and former Executive Director of the Gorlin Syndrome Alliance, has been invited to give a talk at the on Friday, March 27th. She will be part of a panel on “Updates in Cutaneous Oncology” and speak on “Living with Gorlin Syndrome and the Power of Advocacy”.

Julie aims to raise awareness among dermatology professionals of the many burdens and manifestations of this rare disease including the multiple basal cell carcinomas, highlight the importance of early diagnosis, multidisciplinary care, and collaboration between clinicians, researchers, and patient advocacy organizations.

Hope to see you there!

American Academy of Dermatology

03/20/2026

Every diagnosis has a story. Every surgery. Every scan. Every question. What if all those stories could move research faster? They can. Something new is launching soon.

03/18/2026

Something powerful is coming for the Gorlin community. For years, your stories have shaped research. Now we’re taking that impact to the next level. Stay tuned.

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