GSA Executive Director Featured on PeDRA Pearls Podcast

We’re proud to share that Gorlin Syndrome Alliance Executive Director Meredith Weiss was recently featured on PeDRA Pearls, the podcast from the Pediatric Dermatology Research Alliance (PeDRA).

In the episode, Meredith reflects on her personal journey into advocacy—from training as an attorney to navigating her daughter’s diagnosis—and how that experience ultimately led her to leadership within the Gorlin Syndrome Alliance. She also highlights the work GSA is doing today to provide education and support, fund research, and amplify patient voices across the scientific landscape.

Meredith discusses the research priorities identified by our community, including the need for better treatments to reduce scarring from basal cell carcinomas and less invasive options for managing jaw cysts. She also speaks candidly about the emotional toll of living with a lifelong condition and the resilience families show every day as they adapt, advocate, and build full lives alongside Gorlin syndrome.

The conversation also explores GSA’s longstanding partnership with PeDRA and why collaboration between patients, clinicians, and researchers is essential to meaningful progress. Meredith shares how patient groups can help shape research agendas, provide critical data, and ensure that studies focus on what matters most to those living with the disease.

Looking to the future, Meredith describes GSA’s big hope: driving research and patients at the center of discovery every step of the way.

We’re grateful to PeDRA for spotlighting the importance of patient-led advocacy and for giving Meredith the opportunity to represent our community!

🎧 Listen to the full conversation on PeDRA Pearls here!