About us

We're building the support we wished we'd had.

RareJourney was founded by parents navigating the rare disease journey themselves. We started with the app we wished existed: a companion that helps families manage the everyday complexity of rare disease, without adding to the burden.

Now we're going further. We're based in Australia, starting with Myhre syndrome, and building the tools, data and research partnerships that help every family on a rare journey.

What we're building

  1. Your health story in one place. Journal symptoms and appointments, keep records together and walk into every appointment prepared.

    /01

    RareJourney

    App

  2. Your full record on a bigger screen, for the paperwork-heavy moments and the people who help you care.

    /02

    RareJourney

    Platform

    Web, coming soon

  3. Patient-consented, research-grade natural history data for pharma, researchers and advocacy groups working on rare disease.

    /03

    RareJourney

    Life Sciences

The team

A small team of parents, builders and healthcare advocates who care deeply about this work.

  • James Riddell

    Design

  • Ivana Goluza Riddell

    Health and Research

  • Ines Goluza

    AI and Product Technologist