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Gorlin Syndrome Alliance

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Austin, TX
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.

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

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.

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.

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.

06/05/2025

We’re funding research—putting real dollars toward science and discovery. We want your input. What should we study? What challenges matter most to you?

https://rtw1z.share.hsforms.com/24h_TBC2ERO6VKRrBrWI-lg

06/04/2025

On behalf of the GSA, Dr. Ervin Epstein and executive director, Meredith Weiss, attended the CZI Science in Society conference in Las Vegas last week. This novel convening brings rare disease grantees together to explore cross disease collaborations and opportunities to expand our impact as advocacy organizations.

Speakers included Dr. Rob Califf, former commissioner of the FDA, Jim Hopper, of Fred Hutch and NORD’s Rare Cancer Coalition, and Dr. Fyodor Urnov, from the Innovative Genomics Institute.

We are excited to explore some new connections and share exciting conversations that came from this meeting!

06/02/2025

Dr. Amir Aboutalebi, MD, FAAD, is a board-certified dermatologist with over 10 years of experience in medical and surgical dermatology. He provides expert care for a wide range of skin conditions, including acne, eczema, psoriasis, and complex autoimmune and blistering diseases. Dr. Aboutalebi also specializes in skin cancer prevention and management. Dr. Aboutalebi graduated with honors from Baylor College of Medicine and completed his dermatology residency at Harvard Medical School. His training included rotations at Massachusetts General Hospital, Brigham and Women’s Hospital, and Dana-Farber Cancer Institute. He is a fellow of the American Academy of Dermatology and an active member of the Texas Dermatological Society.

05/30/2025

Registration is now open for the Golf for the GSA 2025 Tournament on October 13th in Portsmouth, NH!

Visit: www.birdease.com/GSA to register now!

05/20/2025

Over his nearly six-decade career, Dr. Ervin Epstein Jr., MD, a dermatologist based in Oakland, CA, has significantly transformed the possibilities for individuals with Gorlin syndrome. His pivotal contributions include identifying the genes responsible for the majority of Gorlin syndrome cases and developing a small molecule therapy to inhibit basal cell growth. We are privileged to welcome him back to our patient conference.

05/19/2025

Dr. Alt-Holland, a Skin Cancer Researcher and Associate Professor at Tufts University School of Dental Medicine and a member of the GSA Medical and Scientific Advisory Committee, will be presenting her latest research on basal cell carcinomas at our 2025 Patient Conference in Orlando. We are pleased to welcome her back.

05/15/2025

Big News! 🧬✨

The Gorlin Syndrome Alliance 2025 Research Grant Award goes to Dr. Barbara Rivera, Principal Investigator and Miguel Servet Fellow at the Rare Tumors Lab – Hereditary Cancer Programme (IDIBELL).
Her project, “Gorlin Syndrome Beyond PTCH1 and SUFU: Leave No Patients Undiagnosed,” earned top scores from both our Medical and Scientific Advisory Committee and our Community Grant Review Committee—a first-time initiative that brought the voices of patients and caregivers into the heart of the research review process.

We're deeply thankful to all researchers who applied and to our dedicated reviewers who made this possible.

💡 Dr. Rivera’s research brings us closer to a future where everyone with Gorlin syndrome is diagnosed and supported.

Want to help fund more Gorlin syndrome research like this?
Donate now and be part of the progress: https://aabbnvua.donorsupport.co/page/GSAdonations

Address

Austin, TX

Opening Hours

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

Telephone

+12676896443

Website

https://linktr.ee/gorlinsyndrome

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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.