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 orFollow us on instagram @theraremindtalks

14 episodes

1mo ago latest

monthly cadence

English language

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Episodes 14

14: Between Care and Cure, Building What Doesn’t Exist Yet (with Erika Stariha)
1mo ago · 31:57
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 m
13: Designing Education Around People, Not Conditions (with Katarzyna Świeczkowska)
2mo ago · 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 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 bi
12: From Genes to Powerful Answers (with Célia Azevedo Soares)
8mo ago · 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. 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 patt
11: How to Break Data Silos in Rare Diseases (with Francisco Aguiar)
10mo ago · 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. 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. Fina
10: Hope and Leadership: Uncharted Lessons (with Ada Lio)
11mo ago · 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 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 betwee
09: Treating the Patient, Not the Disease (with Richard Novak)
11mo ago · 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 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 repu
08: From Adversity To Powerful Global Leadership (with Pat Furlong)
1y ago · 27:43
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 pe
07: Chasing My Cure: A New Playbook (Hope And Data)
1y ago · 9:42
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.
06: How to Unlock a Rare Community? (with Ana Rita Moreira)
1y ago · 31:42
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 i
05: Patient-Led AI for Better Health (with Bruno Amaral)
1y ago · 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 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, espec
04: Can Data Standards Unlock Better Solutions? (with Ronald Cornet)
1y ago · 31:52
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: b
03: Can AI Make Healthcare More Human? (with Pedro Gouveia)
1y ago · 40:49
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 connectio
02: What Are We Forgetting? (with José Videira)
1y ago · 28:36
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 t
01: Rare Mind Talks (with André Correia)
1y ago · 4:04
"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

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Rare Mind Talks

Episodes 14

14: Between Care and Cure, Building What Doesn’t Exist Yet (with Erika Stariha)

13: Designing Education Around People, Not Conditions (with Katarzyna Świeczkowska)

12: From Genes to Powerful Answers (with Célia Azevedo Soares)

11: How to Break Data Silos in Rare Diseases (with Francisco Aguiar)

10: Hope and Leadership: Uncharted Lessons (with Ada Lio)

09: Treating the Patient, Not the Disease (with Richard Novak)

08: From Adversity To Powerful Global Leadership (with Pat Furlong)

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

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

05: Patient-Led AI for Better Health (with Bruno Amaral)

04: Can Data Standards Unlock Better Solutions? (with Ronald Cornet)

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

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

01: Rare Mind Talks (with André Correia)

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Episodes 14

14: Between Care and Cure, Building What Doesn’t Exist Yet (with Erika Stariha)

13: Designing Education Around People, Not Conditions (with Katarzyna Świeczkowska)

12: From Genes to Powerful Answers (with Célia Azevedo Soares)

11: How to Break Data Silos in Rare Diseases (with Francisco Aguiar)

10: Hope and Leadership: Uncharted Lessons (with Ada Lio)

09: Treating the Patient, Not the Disease (with Richard Novak)

08: From Adversity To Powerful Global Leadership (with Pat Furlong)

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

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

05: Patient-Led AI for Better Health (with Bruno Amaral)

04: Can Data Standards Unlock Better Solutions? (with Ronald Cornet)

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

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

01: Rare Mind Talks (with André Correia)