Tag: podcast
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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.
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In “Designing Education Around People, Not Conditions”, I speak with Katarzyna Świeczkowska (a.k.a. Kasia), rare disease advocate, mother, and founder of an innovative inclusive school in Poland. Together, we explore how the F-Words for Child Development (Function, Fitness, Fun, Family, Friends, and Future) are transforming education for children with complex needs.
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“From Genes to Powerful Answers” takes us on a guided journey through the world of genetics with Célia Azevedo Soares. We explore why genes matter so deeply in rare diseases and how our understanding of them has evolved to shape the entire path from suspicion to diagnosis.