Building Community, Advancing Research: A Conversation with the Gorlin Syndrome Alliance

In this episode of PeDRA Pearls, we’re joined by Meredith Weiss, Executive Director of the Gorlin Syndrome Alliance (GSA), to explore the intersection of patient advocacy, education, and research. Meredith shares her personal journey into rare disease advocacy and discusses how the GSA supports patients through community-building, clinician-led education, and a growing commitment to funding research–particularly in dermatology. Together, we highlight the critical role patient advocacy organizations play in improving quality of life and advancing meaningful, patient-centered research.

Gorlin Syndrome Alliance RFA

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