Unlocking insights hidden in the rare disease community.
Track, manage and discuss lived experiences to contribute to a smarter, more connected understanding of rare disease.
Navigating the Unknown, Together
Navigating a rare diagnosis can be overwhelming. Information is scattered. Insights are hard to find. Support can feel out of reach. RareJourney brings it all together by combining clinical knowledge, community experience, and AI-powered tools to support families and healthcare professionals in making sense of the unknown.
Organise the Journey
Track symptoms, appointments, tests and milestones, all in one place.
Personalised Insights
Get AI-generated analysis of rare disease presentations, personalised to you.
Bridge to Better Care
Help clinicians understand community context of rare disease, which is often locked or hard to discover.
Community-Powered
Built with families, for families, so we understand the challenges well
A Guided Companion — Not Just an App
We're creating a smarter way to manage rare journeys — one that evolves with you.
Capture the Story
Easily log symptoms, treatments, appointments, and key milestones.
Get Smart Summaries
Our AI engine organises your entries into easy-to-read notes for you, your care team, and future planning.
Personalised Guidance
Compares persoanl records against community insights and published literature, to understand your specific path.
Stay Connected
Share updates with the community and support those living with similar experiences.
See RareJourney in Action
Watch how RareJourney helps families and clinicians navigate the complexities of rare diseases with our AI-powered companion app.
Be First to Know.
We're building RareJourney with families and clinicians at the heart. Subscribe to stay updated — early testers and supporters will get exclusive early access and influence the future of rare disease care.
Contact Us
Have questions about RareJourney? Want to collaborate or learn more? We'd love to hear from you.
What Our Early Users Say
Hear from families and healthcare professionals who are helping shape the future of rare disease care.
“We see a massive potential in this. The rare disease space is neglected because individually they are small”
Armelle
Chief Scientific Officer
“It's a huge mental health benefit... everything in one place. I don't feel as scattered going into appointments”
Haley
Adult living with rare disease
“We (cardiologists) have spoken about how important it is to get the experiential data”
Anni
CNC