Rare Mind Talks

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

"From Genes to Powerful Answers" takes us on a guided journey through the world of genetics with Célia Azevedo Soares [https://www.linkedin.com/in/celiaasoares/]. 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 [https://www.linkedin.com/in/correiaandre], 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 [https://www.theraremind.com] or Follow us on Instagram @theraremindtalks [http://instagram.com/theraremindtalks]

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

In How to Break Data Silos in Rare Diseases, Francisco Aguiar [https://www.linkedin.com/in/francisco-aguiar-21175613] 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 [https://www.linkedin.com/in/correiaandre], 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 [https://www.theraremind.com] or Follow us on Instagram @theraremindtalks [http://instagram.com/theraremindtalks] 🎥 Prefer watching? See the video here [http://www.theraremind.com/raremindknowledge].

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

In this episode, I talk with Ada Lio [https://www.linkedin.com/in/adahlio/], mum of Lukie, founder of lukie.org [http://lukie.org], and board member at the ZTTK Son-Shine Foundation [https://zttk.org]. 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 [https://www.linkedin.com/in/correiaandre], 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 [https://www.theraremind.com/] or Follow us on Instagram @theraremindtalks [http://instagram.com/theraremindtalks]

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

In this Rare Mind Talks episode, I sit down with Richard Novak [https://www.linkedin.com/in/richardnovak/], 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 [https://zttk.org] 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 [https://www.linkedin.com/in/correiaandre], 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 [https://www.theraremind.com] or Follow us on Instagram @theraremindtalks [http://instagram.com/theraremindtalks]

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

In today’s episode, I had the privilege of speaking with Pat Furlong [https://www.linkedin.com/in/pat-furlong-4620b96/], 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 [https://www.linkedin.com/in/correiaandre], 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 [https://www.theraremind.com] or Follow us on Instagram @theraremindtalks [http://instagram.com/theraremindtalks]