Getting to Know Your Patients: Gorlin Syndrome Alliance
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Getting to Know Your Patients: Gorlin Syndrome Alliance
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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.