Empowering Rare Journeys, Together.
A smarter, supportive companion for families and clinicians navigating the complexities of rare diseases — starting with Myhre syndrome.
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 — combining clinical knowledge, community experience, and AI-powered tools to support families and healthcare professionals in making sense of the unknown.
Organize the Journey
Track symptoms, appointments, tests, and milestones — all in one place.
Personalized Insights
Get AI-generated recommendations tailored to the rare condition context.
Bridge to Better Care
Help clinicians make faster, more informed decisions based on real-world patient journeys.
Community-Powered
Built with families, for families — because no one should walk this path alone.
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 organizes your entries into easy-to-read notes — for you, your care team, and future planning.
Personalized Guidance
Access tailored suggestions for symptom management, recommended tests, and care pathways — starting with Myhre syndrome.
Stay Connected
Share updates with your healthcare team or loved ones — whenever you choose.
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