From Diagnosis to Advocacy: A Mother-Daughter Journey with PHACE Syndrome
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From Diagnosis to Advocacy: A Mother-Daughter Journey with PHACE Syndrome
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In this episode, Guin and her mother, Jill Salas, join PHACE Syndrome Community program manager Moureen Wenik to share a powerful story of diagnosis, resilience, and advocacy. They reflect on Guin's journey from complex medical challenges in infancy to becoming a college athlete and aspiring health care professional. The conversation also explores the vital role of family support, patient communities, research, and self-advocacy in helping people with PHACE Syndrome find answers and shape better care. Their message is clear: lived experience can drive meaningful change, and no family has to navigate a rare condition alone.
This episode is presented by Palvella Therapeutics. Although Palvella Therapeutics provided funding for this PeDRA Pearls Podcast, the contents of the podcast were developed independently by PeDRA. Learn more about Palvella Therapeutics.