Gorlin Syndrome Alliance

Gorlin Syndrome Alliance Empowering those with Gorlin Syndrome to live rich, full, happy lives.

Our mission is to promote universal access to the most effective and appropriate information and resources for individuals with Basal Cell Carcinoma Nevus Syndrome and to promote research into new treatments and a cure.

Hope doesn’t happen by accident, it’s built by people who care.Because of our community, the first-ever Clinical Practic...
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

For families living with Gorlin syndrome, the battle never pauses.Neither can our progress.Your year-end gift helps fuel...
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!

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

As we head into the holiday season, consider giving yourself a meaningful gift: enrollment in the GSAPR: Natural History...
11/24/2025

As we head into the holiday season, consider giving yourself a meaningful gift: enrollment in the GSAPR: Natural History Study. Your story and your data matter. Together, we can build a future with better treatments and a stronger community.



https://gorlinsyndrome.org/gsa-patient-registry/

We’re thrilled to announce that the Clinical Practice Guidelines for the Management of Basal Cell Carcinoma in Gorlin Sy...
11/04/2025

We’re thrilled to announce that the Clinical Practice Guidelines for the Management of Basal Cell Carcinoma in Gorlin Syndrome are now available!

Managing basal cell carcinomas (BCCs) has always been one of our biggest challenges in the clinic. Both health care providers and patients can be frustrated by trying to figure out how to manage BCCs related to Gorlin syndrome. Now there is guidance and hope.

🩺 Developed by 130+ doctors and community members, these are the first-ever guidelines created specifically for BCCs with Gorlin syndrome. These guidelines are a tool FOR and BY our community.

✨ These guidelines are FREE for you to access, so please read and share them with your healthcare providers using the QR code in this post.

💪This important project was funded by the GSA as part of our work to accelerate research that matters to our community.

https://www.jaad.org/article/S0190-9622(25)03071-3/fulltext

Three impactful days at the NORD Breakthrough Summit in D.C.! A highlight of the Summit was a surprise appearance by Sen...
10/24/2025

Three impactful days at the NORD Breakthrough Summit in D.C.! A highlight of the Summit was a surprise appearance by Senator Amy Klobuchar (MN), who leads the Rare Disease Congressional Caucus. Despite an ongoing government shutdown, Senator Klobuchar paused the agenda to share her continued support for the rare disease community and the critical legislation shaping U.S. rare disease policy. National Organization for Rare Disorders, Inc. (NORD)

In 2026, the GSA will be offering support group sessions with Dr. Al Freedman, a psychologist and a rare disease Dad.Two...
10/23/2025

In 2026, the GSA will be offering support group sessions with Dr. Al Freedman, a psychologist and a rare disease Dad.

Two sessions will be held quarterly, one for Caregivers and one for Affected adults.

We hope you will join these support groups as his understanding, empathy and ability to relate to others like us is tremendous.

Dr. Al will be introduced at our Town Hall at 8 PM ET on November 9, 2025.

Please mark your calendar and join us!

To learn more about Dr. Al visit rarecounseling.com

Jean Pickford, our GSA Registry Director, joined fellow rare disease advocacy groups at today’s IAMRARE® Registry Meetin...
10/20/2025

Jean Pickford, our GSA Registry Director, joined fellow rare disease advocacy groups at today’s IAMRARE® Registry Meeting in Washington, DC, hosted by the National Organization for Rare Disorders (NORD). The meeting focused on advancing patient-powered data, fostering research collaboration, and sharing strategies for increasing patient enrollment and improving participant retention. Lots of valuable information was exchanged, and we’re excited to implement some of these insights into our GSAPR efforts. National Organization for Rare Disorders, Inc. (NORD)

The GSA would like to thank everyone who braved the blustery weather and made this year's Golf for the GSA tournament a ...
10/14/2025

The GSA would like to thank everyone who braved the blustery weather and made this year's Golf for the GSA tournament a huge success! A special shout out to the Hodge Family for organizing another amazing fundraiser and to all of our sponsors for their generous contributions! This community rocks and we are already looking forward to next year!

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Austin, TX

Opening Hours

Monday 9am - 4pm
Tuesday 9am - 4pm
Wednesday 9am - 4pm
Thursday 9am - 4pm
Friday 9am - 4pm

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+12676896443

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Our Story

Our mission is to thoughtfully support, comprehensively educate and aggressively seek treatments and a cure for BCCNS, its manifestations and sporadic BCCs.