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14: Between Care and Cure, Building What Doesn’t Exist Yet (with Erika Stariha)
Jul 16, 2026 • 31:57
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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13: Designing Education Around People, Not Conditions (with Katarzyna Świeczkowska)
Jun 18, 2026 • 37:59
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…
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12: From Genes to Powerful Answers (with Célia Azevedo Soares)
Dec 11, 2025 • 40:18
“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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11: How to Break Data Silos in Rare Diseases (with Francisco Aguiar)
Oct 9, 2025 • 28:21
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.
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10: Hope and Leadership: Uncharted Lessons (with Ada Lio)
Sep 25, 2025 • 29:11
In this episode, I talk with Ada Lio, mum of Lukie, founder of lukie.org, and board member at the ZTTK Son-Shine Foundation. Joining me from Boston, Ada shares her perspective on hope and leadership in rare diseases, offering uncharted lessons from her journey as both a parent and a leader…
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09: Treating the Patient, Not the Disease (with Richard Novak)
Sep 11, 2025 • 29:53
In this Rare Mind Talks episode, I sit down with Richard Novak, CEO of Unravel Biosciences, to explore how RNA provides real-time insight into the body’s actions, while DNA remains static. With the motto of treating the patient, not the disease, this shift in approach changes how we understand rare…
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08: From Adversity To Powerful Global Leadership (with Pat Furlong)
Jul 17, 2025 • 27:43
Going from adversity to powerful global leadership. Pat’s story reminds us that behind every movement is a human heart, broken but beating louder than ever.
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07: Chasing My Cure: A New Playbook (Hope And Data)
Jul 3, 2025 • 09:42
This episode explores how Dr. Fajgenbaum, co-founder of Every Cure and CDCN, used precision medicine, drug repurposing, and patient-led research to find a treatment. Not just for himself, but for others. We discuss the power of structured data, the potential of AI, and what it means to fix not just…
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06: How to Unlock a Rare Community? (with Ana Rita Moreira)
Jun 19, 2025 • 31:42
A mother turned global advocate, Ana Rita talks about how her son’s ultra-rare diagnosis sparked a powerful mission. She didn’t wait. She acted. She went from diagnosis shock to launching a research-focused alliance.
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05: Patient-Led AI for Better Health (with Bruno Amaral)
Jun 5, 2025 • 29:06
“Patient-Led AI for Better Health” is the focus of this powerful episode with Bruno Amaral, creator of Gregory, an AI-driven bot. Bruno, built Gregory to help patients find relevant, trustworthy research. The bot filters studies for better outcomes. More importantly, it helps patients, doctors and researchers save time by summarising…