Rare Mind Talks

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. Kasia explains why schools must...

"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. Célia breaks down genes and chromosomes in clear, simple language. She also explains how these concepts support earlier diagn...

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. He explains why data integration, interoperability, and literacy are essential to speed up diagnosis and empower patients. From real-world evidence to patient registries, Francisco highlights how data helps healthcare professionals, researcher...

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 in the community. Together we explore how families define cure beyond medicine: as hope, dignity, and qua...

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 diseases. This special episode was recorded live at the ZTTK Foundation Conference in Boston, capt...

In today’s episode, I had the privilege of speaking with Pat Furlong , the founder of Parent Project Muscular Dystrophy (PPMD) . Pat’s journey from adversity to powerful global leadership is truly inspiring. Following the devastating loss of her two sons to Duchenne muscular dystrophy, Pat channeled her grief into a powerful global movement. This movement has reshaped the landscape of rare disease...

In this episode of " Rare Mind Talks " Podcast, host André Correia dives into Chasing My Cure , the remarkable story of Dr. David Fajgenbaum , a physician, researcher, and patient who nearly died from a rare disease before deciding to fight back with data, science, and hope. This episode explores how Dr. Fajgenbaum, co-founder of Every Cure and CDCN , used precision medicine, drug repurposing, and...

In today's episode, we asked Ana Rita Moreira , How to unlock a rare community ? 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. What began as a personal struggle evolved into a mission to support others facing similar challenges....

"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 complex findings into clear, useful insights. We also discuss h...

In today's episode, our guest Ronald Cornet , an expert in health informatics, explains why inconsistent data causes harmful delays in diagnosis and care. Can data standards unlock better solutions? He shows how shared standards, like the FAIR principles, help researchers work together, speed up clinical trials, and improve treatment. We also discuss how collaboration across the ecosystem is essen...

In this episode, our guest Pedro Gouveia explores how AI and data are not just advancing oncology and rare disease care, but also challenging us to ask: "Can AI make healthcare more human?" We examine both the promise on personalised diagnostics, drug repurposing, connected care, and the roadblocks, including weak data governance and fragmented systems. Pedro shares practical, real-world insights...

In this inaugural episode of the Rare Mind Talks Podcast, we discuss the power of AI and data to transform the landscape of rare diseases. Our guest, José Videira , Chief Digital and Information Officer at Solvias, shares thoughtful insights into how these technologies can accelerate diagnosis and treatment, but also reminds us to pause and ask, “What are we forgetting?” José highlights that while...

"Rare Mind Talks" podcast explores how AI, data, and innovation are transforming healthcare for rare diseases. Hosted by André Correia, a digital transformation leader and rare disease advocate, it aims to simplify complex topics, inspire research, and connect experts to improve lives.  Learn more at  ⁠https://www.theraremind.com⁠  or Follow us on instagram  ⁠@theraremindtalks