Beyond the Build – A Rare Journey with Ines and James

About this episode

Charlotte and Kiet discuss the journey of creating Rare Journey, an AI-powered health app, with its founders James and Ines, inspired by personal experiences with rare diseases.

In this heartfelt episode of Product Pals , Charlotte and Kiet sit down with design lead James Riddell and product leader Ines Goluza , the inspiring team behind Rare Journey — an AI-powered health companion app built to support families navigating rare diseases. After the birth of his son Felix and his diagnosis with the ultra-rare Myhre Syndrome, James, along with his partner Ivana and sister-in-law Ines, channelled their personal experience into building Rare Journey and co-founding the Myhre Syndrome Foundation Australia . What began as a family crisis quickly became a bold mission to support others through empathy-driven tech. 💡 What you’ll hear: Felix’s diagnosis and the origin of Rare Journey Why community knowledge is a superpower in healthcare Building under pressure: hospital rooms to MVP in 6 months Applying product and design thinking in the real world Reflections on scaling, funding, and staying mission-led To find out more about their stories visit: Myhre Syndrome Foundation Website: ⁠https://myhresyndromeaus.org/⁠ Rare Journey: ⁠ https://www.therarejourney.com/⁠ Other Resources: Ronald McDonald House Foundation https://rmhc.org.au/

People in this episode

Hosts: Charlotte Bian, Kiet Truong

Guests: James Riddell, Ines Goluza

Topics covered

• AI in healthcare
• rare diseases
• community support
• product development
• empathy-driven technology
• healthcare innovation

Keywords

• AI health app
• rare diseases
• Myhre Syndrome
• healthcare technology
• family support
• product design
• community knowledge

Mentioned in this episode

Organizations: Rare Journey, Myhre Syndrome Foundation Australia, Ronald McDonald House Foundation

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