January Newsletter

This month’s newsletter has a lot of content packed in, so grab a cup of coffee and settle in! If you have any questions, please email us or pop in to our Town Hall meeting this Sunday evening, 2/1 at 8pm EST! We look forward to the chance to visit with each of you.

⚠️ Memo from our Medical and Scientific Advisors: Avoid SRT!

Members of our Medical and Scientific Advisory Committee have issued a memo to providers that superficial radiation therapy (SRT) should not be used as a treatment for BCCs in Gorlin syndrome patients. This memo is available on our website so you may share with any health care provider who is involved in your BCC treatment plan.

🔬 Now accepting proposals for our grant program

Our competitive grant program is designed to fund research proposals that improve quality of life for people who live with Gorlin syndrome. Your participation and support helps us decide which projects will have the biggest impact! In 2025, our first funded project, the Clinical practice guidelines for the management of basal cell carcinoma in Gorlin syndrome was published. We look forward to seeing what proposals come in this year!

How you can help:

1. Let your clinicians or colleagues know that our RFA is open until March 1, and encourage them to submit applications. More information is available on our website.
2. Volunteer to be part of our Community Grant Review Committee. Anyone from our GSA community is invited to participate and review summaries of the proposals.
3. Make a gift to help us fund more research!

📚 Children’s book on Gorlin Syndrome in the works…

Talking about Gorlin syndrome with children can empower them to take care of their bodies in the special ways that support good mental and physical health. It is so important, and so hard. Dr. Andrea Rustad, a dermatology resident, has written a draft of a book about a super hero with Gorlin syndrome that she will be sharing with us at our next Town Hall meeting on Sunday evening, 2/1 at 8pm EST. Join us to share your feedback!

• To support this project through donation, leave “children’s book” in the comments.
• If you can assist with fundraising for publication, please let us know!

Up ahead:

🦓 Rare Disease Day

Only 1 in 31,000 people is affected by Gorlin syndrome, but one out of every 10 Americans is living with a rare disease. Together, our voices are powerful! Rare Disease Day, on February 28th, is a global initiative to raise awareness and generate support for everyone who is on a rare medical journey.

Ways you can participate:

• SHOW YOUR STRIPES! The zebra is the official mascot for rare disease patients. Historically, medical professionals were told that when they “hear hoofbeats,” they should not expect to see a zebra. In other words, look for the more common answer, a horse. Now, we know that one in ten Americans is actually a zebra! Take a picture of your striped look and share it on social media with the hashtags #ShowYourStripes #GorlinSyndrome and #RareDiseaseDay to join this celebration of the many faces of rare disease.
• Submit your photo for the NORD FACES OF RARE campaign

More RDD 2026 ideas here!

In Case You Missed It-

🫂 Support Groups with Dr. Al

There was great turnout at our January support group with Dr. Al! Thank you to everyone who joined for the first sessions. It is a joy to connect with not only our brothers and sisters from here in the US, but with members of our international Gorlin syndrome family, too! As always, everyone is welcome here. Register now to be part of the April sessions.

• April 8th at 1 PM EST – Support Group for caregivers, parents, guardians, and partners
• April 9th at 1 PM EST – Support Group for adults living with Gorlin syndrome

*Our community groups will continue to meet on off months from Dr. Al’s support groups. These are peer led, and provide another opportunity to get to know the GSA family.

Exciting News from the GSA Natural History Study (formerly GSAPR)

We’re in great company! Hosted on NORD’s IAMRARE® platform—home to more than 70 patient-powered natural history studies—we’re proud to stand alongside leaders advancing better data, better treatments, and better futures for rare disease communities. In 2025, participation in our study increased by 51%, driving meaningful research progress, including one published paper and two scientific posters using GSA data.

There’s more good news: the GSAPR is now the GSA Natural History Study, a name that better reflects our ongoing, longitudinal research following patients with Gorlin syndrome over time. As part of this update, we’ll be enhancing the registry platform over the coming months—while everything continues as usual. No action is needed unless you’d like to enroll or update your record. Thank you for being such a vital part of this progress. Visit the Natural History Study!