Patient Pathways Program

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Patient Pathways Program

Our Telehealth Patient Pathways Nurse is free, confidential information and support service which provides information and links to practical support to our Genetic, undiagnosed and rare disease communities within Australia.

You can book a time to talk with her by completing the online booking form found below.

The Patient Pathways nurse can help you with any questions and/or concerns you may have including:

  • Emotional support if you or someone you care about has a genetic, undiagnosed or rare disease
  • How to manage life with a genetic, undiagnosed or rare disease
  • Questions you may have about your, or the person you care for genetic, undiagnosed or rare disease
  • How to find other organisations and resources that can help you or your families life with a genetic or rare condition
  • Help on guiding you through the healthcare system to access all the relevant services.

We value your personal and health information and we will keep this confidential.

Please note that the Patient Pathways Nurse is only available to people living in Australia.  

To arrange a consultation please complete the booking form below or call 1300 75 50 50

Please complete the form below and our Telehealth nurse will be in touch to set up an appointment time

Once you complete the booking form, this will be sent to the Patient Organisation that you have been referred from and also to the Telehealth nurse. This service is provided as part of an initiative funded by the Federal Government called the Patient Pathways program. The program is run by the Centre for Community-Driven Research and this is who employs the Telehealth nurse that will be in touch with you.



If you are in crisis and need urgent help


If you need immediate assistance, the following organisations may be able to help:

Lifeline Australia 13 11 14
Beyond Blue 1300 224 636
Suicide Call Back Service 1300 659 467
MensLine Australia 1300 789 978
Kids Helpline 1800 55 1800
Disability Information (COVID-19) Helpline 1800 643 787
Parentline information
Blackdog Institute


If you need other services or general patient information

Please visit the GUARD Collaborative websites.

The Patient Pathways Nurse service is able to provide general information and advice on genetic, undiagnosed and rare diseases. The information provided is not a substitute for professional health care. You should always seek your own medical guidance from your doctor or health professional and not disregard professional advice or delay seeking assistance because of any information received from the Patient Pathways nurse.

The Patient Pathways nurse is part of the Patient Pathways program developed by the Centre for Community-Driven Research.

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