HeyJaredAdvoSci Health
Learning about people with rare diseases, health issues, and current events
- Indexed episodes, last 90 days
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- Jul 26, 2026
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- Jul 26, 2026
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Episode 22: The Caregiver as the Core Data Keeper (opens the original)
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When a child has a rare genetic disorder, families track micro-fluctuations in symptoms, medication shifts, and environmental triggers daily. So why does this invaluable data struggle to find a home in structured health systems? In this episode of the AdvoSci Health Podcast, we are joined by Kasey Walsh, Founder of Winsights and a parent-driven researcher. We examine: How families become the primary data keepers in rare disease care. The tension between "anecdotal" observations and clinical data
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