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.

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!

Happening Now! The 3rd Annual Golf for the GSA is on, despite the stormy weather! ⛈️☔️ Thank you to all of the passionat...
10/13/2025

Happening Now! The 3rd Annual Golf for the GSA is on, despite the stormy weather! ⛈️☔️ Thank you to all of the passionate supporters, from sponsors to golfers, friends and family! The entire GSA Community is cheering you on! ⛳️🏌🏻‍♀️

There is still time to add your support to this event! Donate now:

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

The Gorlin Syndrome Alliance has some incredible physicians, scientists and researchers who are part of our journey to f...
08/27/2025

The Gorlin Syndrome Alliance has some incredible physicians, scientists and researchers who are part of our journey to find better treatments, and a cure, for Gorlin syndrome, but it's rare that we get to meet up with any of them in person. This week, we were able to change that and join these Stanford University colleagues in their native habitat on the medical campus, where important research happens. These compassionate collaborators spark thoughtful conversations, help us refine research projects and enrich our work as a patient organization throughout the year.

We are deeply grateful for their commitment and work to advance Gorlin syndrome research, but particularly appreciate their care for the people who live with this disease.

From left to right, Dr. Jean Tang, Dr. Ervin Epstein, Executive Director Meredith Weiss, Dr. Kavita Sarin, Dr. Joyce Teng and Dr. Anthony Oro.

07/11/2025

Swing into action for a cause that matters! 🏌️‍♀️ The 2025 Golf for the GSA Tournament is happening October 13 in Portsmouth, NH.

Whether you’re a seasoned golfer or just in it for the fun, your participation helps make a difference for the Gorlin syndrome community. ⛳️

Register today at Birdease.com/GSA

July is UV Safety Month! Sun protection isn’t just a summer tip — it’s a year-round necessity, especially for those livi...
07/01/2025

July is UV Safety Month!

Sun protection isn’t just a summer tip — it’s a year-round necessity, especially for those living with Gorlin syndrome.

Join us all month long as we share practical tips, favorite sun-safe products, and personal stories from our community. 💛

Let’s protect our skin and raise awareness together.

Thank you Pediatric Dermatology Research Alliance - PeDRA 💜In this episode of PeDRA Pearls, we host a powerful conversat...
06/17/2025

Thank you Pediatric Dermatology Research Alliance - PeDRA 💜

In this episode of PeDRA Pearls, we host a powerful conversation featuring the Gorlin Syndrome Alliance (GSA). Join us as we delve into the world of Gorlin Syndrome through the heartfelt narrative of Taylor Hodge, who recounts her family’s journey following her son’s diagnosis at just 18 months old. Joined by Dr. Elena Hawryluk of Harvard Medical School, the discussion sheds light on current research gaps and future directions in the field. Meredith Weiss, Executive Director of the GSA, also contributes, highlighting the essential patient support programs offered by the GSA and the organization’s unwavering commitment to research and collaboration. This episode offers a blend of personal insight and professional expertise, providing listeners with a comprehensive understanding of Gorlin Syndrome and the ongoing collaborative efforts to support those affected.

Dr. Brian A. Cahn is a board-certified dermatologist and fellowship-trained Mohs surgeon specializing in skin cancer tre...
06/07/2025

Dr. Brian A. Cahn is a board-certified dermatologist and fellowship-trained Mohs surgeon specializing in skin cancer treatment, facial reconstruction, aesthetic dermatology, complex medical dermatology, and pediatric dermatology. He earned his undergraduate degree from the University of Maryland and his medical degree from Albert Einstein College of Medicine. Dr. Cahn completed his dermatology residency at the University of Illinois Chicago, where he served as Chief Resident in Cosmetic and Aesthetic Dermatology. He further specialized with a fellowship in Mohs Surgery and Dermatologic Oncology at Columbia University Irving Medical Center.

Dr. Cahn is affiliated with Advanced Dermatology & Skin Cancer Associates and is an active member of several professional organizations, including the American Academy of Dermatology, the American Society for Laser Medicine and Surgery, the American Society for Dermatologic Surgery, and the American College of Mohs Surgery. He has contributed to over 25 peer-reviewed publications, reflecting his commitment to advancing dermatologic care.

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