Genetic Health Navigator

Helping you find your way through rare, less common and undiagnosed genetic conditions.

The journey to understand rare and undiagnosed genetic conditions shouldn’t be one you face alone. Our Genetic Health Navigator is a qualified genetic counsellor dedicated to supporting you on your journey. We work collaboratively across our network to connect you with the information, resources, and support you need – matter how rare or complex the condition.

What our navigator can help with

Help you make sense of where you are today and what might come next – understanding that everyone’s experience is unique
Navigate genetic services and testing – guide you through different pathways and help you access what you need
Help you better understand your diagnosis and what it might mean for you and your family
Provide information about your condition – including available supports and resources based on your unique situation
Connect you with people who understand – including other families, support groups and those who have walked this path before
Connect you with wellbeing and practical supports – mental health, emotional, and practical resources
Navigate the healthcare system – we know it’s complex, so we’ll help you understand who does what and how to reach them.

Our Navigator is a trained genetic counsellor, but this service doesn’t replace care from your clinical team. We can’t give medical advice, interpret clinical results, diagnose, treat, or arrange testing. Our goal is to help you access the best possible information and support.

Support in your language

We can arrange a spoken language interpreter for your appointment at no cost to you through the Translating and Interpreting Service (TIS National), which provides interpreters for over 150 languages. Simply let us know your preferred language when completing your booking form, and we’ll arrange this for you.

Communication support for deaf and hard of hearing people

If you are deaf or hard of hearing, we can arrange communication support through the National Relay Service (NRS) for your appointment. This includes Video Relay services using Auslan (available Monday to Friday 7am-6pm AEST, and Saturday 8am-12pm), as well as other communication options such as text relay and voice relay services.

Please indicate your communication preferences in the booking form, and we’ll ensure appropriate support is available at no charge to you.

Our goal is to make you feel as supported as possible throughout your genetic health journey. If you have any questions about accessibility or communication support, please don’t hesitate to contact us.

If you need help booking you can email us at support@geneticalliance.org.au

Supporting you to support your community

Support organisations and community-based care providers are a lifeline for people with rare genetic and undiagnosed conditions. When support involves complex genetic questions or things change quickly, we can provide practical, genetic counsellor-led support for you or for the people you’re guiding and supporting. Refer someone or talk with us yourself.

What our navigator can help with

Answer complex genetics questions in plain language and signpost you (or the person you support) to the right clinical and community services for their unique situation.
Strengthen your knowledge of genetic pathways, concepts, and supports so you can better advocate alongside the people you support.
Clarify referral pathways for clinical genetics and testing across public and private services.
Support timely access to reproductive and family-planning services and counselling.
Connect families with peer and lived-experience networks – including support groups, organisations, and trusted community resources.

This is an informational and supportive service. It does not replace clinical care for your members or clients. We do not provide medical advice, interpret clinical results, diagnose, treat, or arrange testing. Our role is to help you and your community understand options, navigate pathways, and connect with services and peer support.

To access the service

Individuals can book directly and list your support organisation as the referrer. (Link to booking form)

You can book on their behalf by completing as much of the form as possible with consent. (Link to booking form)

You can submit a question directly to our Genetic Health Navigator using this form. (Link to question form)

We can provide free access to communication support

Spoken-language interpreters (150+ languages) via TIS National which can be selected in the booking form.
Deaf and hard-of-hearing support via the National Relay Service (NRS) — incl. Auslan Video Relay, text relay and voice relay.

Tell us your preferences in the booking form and we’ll arrange it at no charge.

If you need help booking you can email us at support@geneticalliance.org.au

This is a free service, delivered by a trained genetic counsellor, designed to help you find your support for rare, undiagnosed, and genetic health conditions.

Completing this form helps us understand how we can best help you. We understand you may not have all of this information and that is completely ok. Once you have completed the form, you will receive a confirmation email, and our team will be in touch as soon as possible.

If you need help booking you can email us at support@geneticalliance.org.au

Have a question for our Genetic Health Navigator?

We’re here to provide free, confidential information and support. Please note we cannot provide medical advice, interpret clinical results, diagnose, treat, or arrange testing.

If you need help booking you can email us at support@geneticalliance.org.au

Testimonials

I felt someone understood our situation and supported, encouraged us to get answers we sought. It is one of the few times in a difficult journey, we didn’t feel alone. Thank you!

Just meeting me where I was at and being immediately connected to a wider network of support has meant so much to our family.

Navigation is about more than information.
It’s about being heard, finding direction, and knowing you don’t have to face undiagnosed, rare, and genetic health conditions alone.

Disclaimer

This is an informational and supportive service. It does not replace clinical care. We can not provide medical advice, interpret clinical results, diagnose, treat, or arrange testing. Our role is to help you and your community understand options, navigate pathways, and connect with services and peer support.