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
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