HeyJaredRare Mind Talks
"Rare Mind Talks" podcast explores how Education, AI, data, and innovation are transforming healthcare for rare diseases.
- Indexed episodes, last 90 days
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- Jul 16, 2026
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- Jul 16, 2026
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14: Between Care and Cure, Building What Doesn’t Exist Yet (with Erika Stariha) (opens the original)
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In "Between Care and Cure, Building What Doesn't Exist Yet", Erika Stariha shares her journey from undiagnosed parent to European foundation founder. Her son's eight-year wait for a SATB2 diagnosis shaped everything that followed. Consequently, she built a foundation focused on systems, not just symptoms. Erika discusses the real barriers to advocacy engagement: language, time and emotional load. However, she also reveals what motivates over sixty clinicians to volunteer their expertise. Meanwhi
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