The GSNV Pathways Nurse
The GSNV Pathways Nurse is a free, confidential Telehealth service with a specialist nurse who can provide practical and compassionate support to individuals, families and carers living with genetic, undiagnosed and rare disease in Australia.
A formal consultation with a GSNV Pathways Nurse offers targeted advice and support relating to interventions and resources for patient wellbeing.
Contact a GSNV Pathways Nurse for:
- 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
- Information navigating health services to improve your care or caring for someone living with genetic, undiagnosed or rare disease
- Resources and Organisations to help individuals, families and carers living with a genetic, undiagnosed or rare disease.
PRIVACY: The GSNV values your personal and health information and we will keep this confidential.
The Patient Pathways Nurse is only available to people living in Australia.
You can book a time to talk with a Pathway Nurse by completing the online booking form.
Completed booking forms are sent to the GSNV and to the Pathway nurse.
The program is run by the Centre for Community-Driven Research
If you have trouble completing this form go here or to www.pathwaysportal.org or email administration@cc-dr.org
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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.
- Genetic Support Network Victoria – gsnv.org.au
- Syndromes without A Name (SWAN) – Australia – swanaus.org.au
- Genetic Alliance Australia – geneticalliance.org.au
The GSNV Pathways Nurse service provides 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 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.
The program was developed by the Centre for Community-Driven Research (CCDR) and facilitated by members of the GUARD Collaborative that comprises of the Genetic Support Network of Victoria (GSNV), Genetic Alliance Australia (GAA) and Syndromes Without A Name (SWAN).