Genetic Undiagnosed and Rare Disease Patient Pathways Nurse
This is a free, confidential information and support service which provides information and links to practical support.
Our qualified nurse is available <days, hours>. You can book a time to talk with her by completing the online booking form 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.
Please note that the Patient Pathways Nurse is only available to people living in Australia.
Arrange a consultation
To book a time to speak with the Patient Pathways Nurse, please complete the form below.
If you are suitable for this program, we will confirm a time for your call by email.
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|
If you need other services or general patient information
Please visit the GUARD Collaborative websites.
- Genetic Support Network Victoria – gsnv.org.au
- Syndromes without A Name (SWAN) – Australia – swanaus.org.au
- Genetic and Rare Disease Network – gardn.org.au
- Genetic Alliance Australia – geneticalliance.org.au
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. www.cc-dr.org/au/pathways