Welcome to RareJourney support. We're here to help you get the most out of your health companion app.
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Find answers to common questions and learn more about RareJourney features.
Rare Voices Australia
Website: rarevoices.org.au
Australia's leading rare disease advocacy organization
Genetic Alliance Australia
Website: geneticalliance.org.au
Support and information for genetic conditions
Lifeline Australia
Phone: 13 11 14 (24/7)
Crisis support and suicide prevention
Beyond Blue
Phone: 1300 22 4636 (24/7)
Mental health support and counseling
Kids Helpline
Phone: 1800 55 1800 (24/7)
Counseling service for young people aged 5-25
These are independent organizations. RareJourney has no affiliation with these resources but provides them as helpful references for families affected by rare conditions.
RareJourney was founded by parents navigating the rare disease journey themselves. We built the app we wished existed — a companion that helps families manage the everyday complexity of rare disease, without adding to the burden.
To empower families living with rare diseases by providing tools that:
We're based in Australia and currently focused on supporting families affected by Myhre Syndrome, with plans to expand to other rare diseases.
We're a small team of parents, builders, and healthcare advocates who care deeply about this work. We believe:
Version
1.0
Platform
iOS
Location
Sydney, Australia
Made with
Lived experience