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PODCAST

Rare Mind Talks

"Rare Mind Talks" podcast explores how Education, 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

technology life sciences

All Episodes

28:21

11: How to Break Data Silos in Rare Diseases (with...

Rare Mind Talks ·

2025/10/09

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

en-US

29:53

09: Treating the Patient, Not the Disease (with...

Rare Mind Talks ·

2025/09/11

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

en-US

27:43

08: From Adversity To Powerful Global Leadership...

Rare Mind Talks ·

2025/07/17

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

en-US

09:42

07: Chasing My Cure: A New Playbook (Hope And Data)

Rare Mind Talks ·

2025/07/03

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

en-US

31:42

06: How to Unlock a Rare Community? (with Ana Rita...

Rare Mind Talks ·

2025/06/19

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

en-US

31:52

04: Can Data Standards Unlock Better Solutions? (with...

Rare Mind Talks ·

2025/05/22

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

en-US

40:49

03: Can AI Make Healthcare More Human? (with Pedro...

Rare Mind Talks ·

2025/05/08

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

en-US

28:36

02: What Are We Forgetting? (with José Videira)

Rare Mind Talks ·

2025/04/24

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

en-US

4:04

01: Rare Mind Talks (with André Correia)

Rare Mind Talks ·

2025/04/08

"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

en-US

9 results

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