Tag: data
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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.
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In How to Break Data Silos in Rare Diseases, Francisco Aguiar from BI4ALL joins me to explore how data and AI can truly reshape the rare disease ecosystem.