🚀 Join the RareJourney Pilot Program

Be among the first to experience RareJourney and help shape the future of rare disease support. Your feedback will directly influence how we build this companion for families and clinicians.

Registration Details

⚠️ Important Terms - Please Read Carefully

Before joining our pilot program, please acknowledge these key points:

📄 RareJourney Beta Terms & Conditions

Last updated: 30 Sept, 2025

These Terms and Conditions ("Terms") govern your participation in the RareJourney beta program. By using the RareJourney app ("App"), you agree to be bound by these Terms. If you do not agree, please do not use the App.

1. About the App

RareJourney is an early-stage AI-powered digital health companion designed to support people living with rare diseases. It helps users track health data, surface insights, and prepare for clinical discussions through structured tools and AI support.

This is a beta version, provided for testing and feedback purposes only. It is not a regulated medical device and does not provide diagnostic or therapeutic advice.

  • This beta version is provided for testing and feedback only.
  • It may contain bugs or incomplete features.
  • Functions may change or be removed.
  • The App is not a regulated medical device.
  • It does not provide diagnostic or therapeutic advice.

2. Eligibility & Participation

To participate in the beta, you must:

  • Be 18 years or older (or the parent/guardian of a participating minor)
  • Be a person living with a rare disease or a caregiver
  • Consent to participate in the beta under these Terms
  • Agree to provide voluntary feedback

You may withdraw from the beta at any time by contacting us at support@therarejourney.com

3. Data Collection & Use

We collect only the data you choose to share. This may include:

  • Personal notes, symptoms, documents, and event tracking
  • AI chat interactions
  • Feedback or usage data to improve the app

Your data is stored securely, and access is limited to authorised personnel.

We use your data to:

  • Provide the features of the App
  • Train and personalise AI responses (if opted-in)
  • Improve RareJourney's design, safety, and relevance

4. How the AI Works

RareJourney uses Microsoft Azure OpenAI and a technique called Retrieval-Augmented Generation (RAG). This enables the AI assistant to:

  • Pull insights from peer-reviewed research, clinical guidelines, and community-contributed knowledge
  • Tailor responses using the information you provide

All responses are informational only. The AI does not diagnose, treat, or recommend medical actions. You must always consult a healthcare professional for clinical decisions.

⚠️ Important:

  • The AI may produce incomplete or inaccurate information.
  • Responses are for information only and not medical advice.
  • Always consult your healthcare professional for diagnosis, treatment, or decisions about care.
  • Do not use RareJourney for emergency or urgent medical needs.

5. Security & Privacy

We take privacy seriously and align with:

  • The Australian Privacy Principles (Privacy Act 1988)

All personal data is encrypted and securely stored using third-party technology providers. Documents and health records are not accessed without your explicit action.

You can request:

  • A copy of your data
  • Deletion of your data
  • Withdrawal from the beta program

Contact: support@therarejourney.com

6. Use of Technology Partners

RareJourney works with external service providers ("Technology Providers") to deliver key elements of app functionality, including data storage, AI processing, and system infrastructure.

RareJourney works with external service providers to deliver app functionality, AI processing, and secure data storage. These technology providers are selected based on their compliance with international data privacy standards.

A list of our current Technology Providers is available upon written request by emailing: James@therarejourney.com

We do not share your data for advertising or unrelated purposes.

7. Intellectual Property

The RareJourney app, including its design, AI agents, codebase, and all associated intellectual property, is owned by RareJourney Pty Ltd.

You retain ownership of the personal content you contribute. By using the app, you grant us a non-exclusive, revocable license to use that content for the purposes of delivering, improving, and evaluating the App during the beta phase.

8. AI Disclaimer

The RareJourney AI assistant is intended as a supportive information tool only. It is not a substitute for professional medical advice, diagnosis, or treatment.

You agree not to rely on AI outputs as medical advice and to consult your clinical team before making any decisions regarding care or treatment.

9. Limitation of Liability

RareJourney is provided on an "as is" basis as part of a beta program. To the extent permitted by law:

  • We exclude all warranties (express or implied)
  • We are not liable for any loss, damage, or harm arising from use of the app or AI assistant
  • You use the app voluntarily and at your own risk

10. Termination

We reserve the right to suspend or terminate your access to the beta at any time if:

  • You breach these Terms
  • You misuse the app
  • The beta program is concluded

You may terminate at any time by discontinuing use and requesting data deletion.

11. Contact & Support

For support, concerns, or feedback:

📧 James@therarejourney.com

📍 RareJourney Pty Ltd, NSW, Australia