Rare Mind Talks

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. Meanwhile, she explains why clear priorities matter more than chasing every opportunity.

The conversation moves through leadership, collaboration and decision making under scarce resources. Ultimately, Erika reminds us that small progress is still progress. It offers honest insight for leaders navigating fragmented data and fragmented systems alike.

Rare Mind Talks podcast explores how AI, data, and Education are transforming healthcare for rare diseases. Hosted by André Correia, a digital transformation leader and rare disease advocate, this Podcast aims to simplify complex topics, inspire research, and connect experts to improve lives.

Learn more at https://www.theraremind.com or

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 move beyond deficits and focus on strengths, aspirations, and participation. We examine how communities can become more inclusive through action rather than intention alone, and explore one of the biggest challenges facing families: preparing young people with rare diseases for adulthood, independence, and a meaningful future.

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, this Podcast aims to simplify complex topics, inspire research, and connect experts to improve lives.

Learn more at https://www.theraremind.com or

"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 diagnosis, and why genetics literacy is still a challenge for many professionals. From there, we dive into the natural history of disease and why long-term, structured data is essential for discovering patterns and future treatments.

We also look at the role of AI and data science in finding new genes, identifying red flags and speeding up the search for answers. And finally, we highlight how patient organisations can become powerful hubs for genetic education, helping families and communities make sense of complex information with clarity and confidence.

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, this Podcast aims to simplify complex topics, inspire research, and connect experts to improve lives.

Learn more at https://www.theraremind.com or

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, researchers, and Pharma companies work together for more personalised care. We discuss Europe's journey toward a connected health data space and the crucial role of patient advocates in driving this change.

Finally, we reflect on how sharing data ethically and collaboratively can give patients a stronger voice, enabling faster insights, better treatments, and more hope for the rare disease community.

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, this Podcast aims to simplify complex topics, inspire research, and connect experts to improve lives.

Learn more at https://www.theraremind.com or

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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 quality of life. Ada explains how parents, even without scientific training, hold vital knowledge that can guide research from day one. We also discuss leadership lessons from her journey, the balance between urgency and thoughtful decisions, and how patient voices should steer science and industry.

Finally, Ada reflects on building collaboration across families, researchers, and biotech, and why being "loud", in our own ways, matters for rare disease communities.

This conversation is about people, data, and the shared power to drive change.

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, this Podcast aims to simplify complex topics, inspire research, and connect experts to improve lives.

Learn more at https://www.theraremind.com or

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, capturing the energy of families, researchers, and advocates.

Richard explains why every patient's journey is unique. He shows how Unravel uses AI and data to identify subgroups, predict responses, and repurpose drugs. The focus shifts from treating diseases to treating patients.

We also discuss the role of patient advocates, global data collection, and breaking barriers in research. Finally, we reflect on trust, transparency, and learning from failure. This conversation is about redefining healthcare with patients at the centre.

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, this Podcast aims to simplify complex topics, inspire research, and connect experts to improve lives.

Learn more at https://www.theraremind.com or

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 advocacy and research.

What began as a mother’s quest for answers blossomed into a pioneering organisation that empowers families and accelerates treatments. Pat’s story is a testament to vision and persistence, showcasing how a single voice, driven by purpose, can mobilise a global community and inspire transformative change in the healthcare world.

Rare Mind Talks podcast explores how rare diseases and healthcare is transformed by AI, data, and innovation. Hosted by André Correia, a rare disease advocate and digital transformation leader, this Podcast aims to simplify complex topics, inspire research, and connect experts to improve lives.

Learn more at https://www.theraremind.com or

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 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 the science, but the system.

Moreover, we discuss how AI and real-world data accelerate discoveries in rare diseases.

We also reflect on the importance of hope as a strategic driver, and not just an emotion. Finally, this episode encourages leaders and innovators to rethink how research and technology can unite for impact.

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, this Podcast aims to simplify complex topics, inspire research, and connect experts to improve lives.

Learn more at https://www.theraremind.com or

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. Through advocacy, community building, and raising awareness, Ana Rita and the V-ATPase Alliance are helping reshape the future for families affected by this rare disease, turning pain into purpose and isolation into action.

An inspiring journey of resilience and impact, where we reflect on the role of patient groups and also why building trust takes time.

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, this Podcast aims to simplify complex topics, inspire research, and connect experts to improve lives.

Learn more at https://www.theraremind.com or

"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 how Gregory is open, customisable, and built with transparency at its core. Bruno balances life as a patient and innovator. Moreover, we explore how AI can empower both patients and professionals, especially in rare diseases.

Bruno sees doctors as future mentors, guiding informed patients who access reliable data in real-time. His story reminds us: innovation doesn't only come from labs, it can come from lived experience.

This episode is essential for anyone curious about AI, rare diseases, and the future of patient-led innovation.

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, this Podcast aims to simplify complex topics, inspire research, and connect experts to improve lives.

Learn more at https://www.theraremind.com or