Rare Mind Talks

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 persiste...

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, b...

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...

"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.

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 essential. Patient advocates must be part of shaping how data is shared and used. Ronald closes with practical steps for hospitals, policymakers, and professionals.

This episode highlights a simple truth: better data leads to better outcomes. And...

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 while calling attention to where the sector must catch up. At the heart of it all is a recurring theme: for AI to truly transform healthcare, it must strengthen trust, empathy, and the human connection.

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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 the promise of AI is immense, much of its potential remains untapped. He stresses the importance of prioritising direction over perfection and explains why clearly defining the problem is often half the solution. We als...

"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

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