About us
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.
Your health story in one place. Journal symptoms and appointments, keep records together and walk into every appointment prepared.
/01
RareJourney
App
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
Patient-consented, research-grade natural history data for pharma, researchers and advocacy groups working on rare disease.
/03
RareJourney
Life Sciences
A small team of parents, builders and healthcare advocates who care deeply about this work.
Design
Health and Research
AI and Product Technologist