Navigating the health system

It can sometimes be tricky to know where the right place to go for healthcare and support when you either have or are suspected to have a genetic condition. At the GSNV we believe that there are three areas that help you navigate the health system when living with a genetic condition.

A good place to start is to visit a clinical genetics service.  Clinical genetics services are medical services that specialise in genetics. These services are staffed by Clinical Geneticists and Genetic Counsellors.

There are a range of clinical genetics services as well as support services for those impacted by genetic conditions throughout Victoria.

Clinical genetics services are medical services that specialise in genetics. These services are staffed by Clinical Geneticists and Genetic Counsellors.  A Genetic Counsellor is an allied health professional who has post-graduate qualifications specialising in medical genetics and counselling, they provide information about genetic conditions, and help you make informed decisions.Genetic testing is provided by a number of public and private providers and is accessed through a clinical genetic service or some medical specialists.

Types of genetic services available in Victoria

In Victoria, Genetic services in Victoria cover diagnosis, screening and testing.

Public genetic services are available at three metropolitan hub hospitals that provide outreach clinics to other metropolitan, regional and rural centres. For a full list of clinical genetic services in Victoria and nationally please go to Clinical Genetics Services and Genetics Clinic

For a listing of Clinical Genetics Services in Victoria click here.

To be seen by a clinical genetics service you will need a referral from your doctor.

Sometimes people find it helpful to speak with others with a similar experience. Support groups are often able to provide this service as well as helping with practical condition specific information. If you cannot find a support group relevant to your enquiry the Genetic Alliance Australia (formerly known as Association of Genetic Support of Australasia) is a not for profit organisation that can also help. Genetic Alliance Australia have a registry of contacts and will ensure that you have someone to talk to or a place to go to make your journey a little easier.

 If you are interested in connecting with a support group, you can visit our list of support  groups, or contact us to see if we can put you in touch with someone.

Community services can be very useful when either managing your own condition or when you are caring for a family member or a friend. In Victoria we have many great support services however that sometime can be challenging to find the Community services that you need.

The Genetic Link is an on-line repository which lists a wide selection of useful and reliable support services such as disability services, advocacy services, government agencies, and respite. 

Mental Health

There are a number of support services that specialise in mental health support. Please check our Directory of Community Support Services  for a complete list . For more in depth resources you can visit the Mental Health resources in our Genetic Link. 

If you are in an emergency , or at immediate risk of harm to yourself or others , please contact emergency services on 000. Many metal health services have online or telephone support 24/7. To talk to someone now call:

Suicide call back service: 1300 659 467, LifeLine : 13 11 14

Here are some of the national services that can be of assistance :

National Disability Insurance Scheme

Taking part in everyday activities and having the capacity to do so is an important consideration for everyone in our community, over their lifetime. Receiving access to the right support to live a productive and full life and to manage disability is an important social right.

Services and support to people with permanent and significant disability in Australia is offered through a national program known as the National Disability Insurance Scheme or the NDIS.  The National Disability Insurance Agency (NDIA) is an independent statutory agency responsible for implementing the NDIS in every state and territory.the NDIS will work with people with a disability, and their families and carers, to identify what support they need to reach their goals in independence, health and wellbeing, involvement in the community, education and employment.

For further information on the NDIS please  access this downloadable Information Resource

Patient Pathways Program

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.
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If you are in crisis and need urgent help, Call 000

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

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.  www.cc-dr.org/au/pathways
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