Episodes

ONCE UPON A GENE - EPISODE 214 A Courageous Gift - The Power of Brain and Tissue Donation in Rare Disease Research with Anne Rugari Anne Rugari is an advocating powerhouse, an author of two children's books, a mom, and two of her children have passed away from Krabbe disease. She joins us to share her personal story and also share her knowledge about tissue and organ donation. EPISODE HIGHLIGHTS C...

Up to 24% of operating-room time can be recovered without making a single operation faster, says surgeon and Proximie CEO Nadine Hachach-Haram. In this Faces of Digital Health interview, Nadine Hachach-Haram, a practising surgeon and the founder and CEO of Proximie, explains how the company moved from surgical telepresence to an ambient intelligence layer for the operating room, and why most of th...

Janice Chen was a PhD student in Jennifer Doudna's lab at Berkeley when CRISPR was changing biology. The default path was a postdoc and an academic job. Instead, she co-founded Mammoth Biosciences in 2018 with Doudna, Lucas Harrington and Trevor Martin, and by 2021 it was valued at over a billion dollars. Dr. Janice Chen is a co-founder of Mammoth Biosciences and co-invented DETECTR, which uses CR...

In 2017, the Catalan Health Service launched one of Europe’s most ambitious health digitalisation strategies. After two decades of building links between separate regional systems, Catalonia would move to a single common data layer, structured with openEHR, and place every application on top of it. The aim was data that is consistently structured, and therefore usable beyond the system that first ...

In this episode of Once Upon a Gene, Effie talks with Brandon Boyd, father of two and author of Delighting in Ben, about raising his son Ben, who lives with FOXP1 syndrome, and the shift from trying to change his son's future to learning to appreciate the person right in front of him. Brandon shares the grief he experienced in the early years, the pressure to pursue every therapy, and the loneline...

She led Medicare when it negotiated drug prices for the first time since the program began in 1965. Now she runs Maryland's $20 billion health department. Dr. Meena Seshamani is Maryland's Secretary of Health, appointed by Governor Wes Moore in April 2025 and the first Indian American to hold the post. She is a head and neck surgeon with a doctorate in health economics, helped pass and implement t...

Before a woman walks into an exam room, decisions have already been made about her care. What research received funding. Which treatments her insurance covers. Whether a specialist is available nearby. Who made those decisions—and how can she help change them? In this special recast of the fifth and final My Vote. Our Health. webinar, Beyond the Paper Gown teams up with Women’s Health Advocates, C...

Malta's health centres settled the digitisation question years ago. The harder work, Dr Stefan Buttigieg argues, starts now. Malta's public primary care has run on an electronic patient record since its rollout began in late 2019. With the European Health Data Space now moving from regulation to implementation, the question in Maltese health centres is no longer whether to digitise but what a matu...

In this episode, Effie talks with Brad Levy, founder of Epilepsy Awareness Day at Disneyland, about what families can expect at the expo, how to make the most of the event, and why connection matters when you’re navigating epilepsy. The expo brings together families, clinicians, hospitals, researchers, and companies working in epilepsy. Across two days, attendees can hear expert presentations on e...