Lived Experience Series



  • To create opportunities to strengthen connection and linkages with key stakeholders and decision makers, through patient lived experience narrative and video presentations demonstrating that lived experience.

  • Working together to make informed and better decisions to improve the health of Victorians living with genetic and rare conditions and their interaction with health services and key stakeholders.


  • Patients are involved in the understanding of their health and life  

  • Patient views and perspective are heard and expressed through their lived experience stories, through their narrative and their in their own words

Why we need a Lived Experience Video Series:

  • It is anticipated this can lead to better outcomes for people living with genetic and rare disease, as well as improving the working environment of those who give professional service help. The stories behind the consumers are an important tool in understanding how to better respond to, design, implement and generate outcomes in health services and related activities.

  • A Lived Experience Exploratory Video Series and this framework will seek to embed lived experience across the sector and into system design processes and decision making.  In this way, participants will bring their stories to decision makers and stakeholders in a mutual, respectful exchange that sees both as equal partners in the delivery of responsive and inclusive services and systems.

  • This Framework provides a guide to encourage efforts to facilitate opportunities to learn and improve, and for people with lived experience of genetic and rare conditions to work together with key stakeholders in health as equal partners.

  • This Framework services as a guide to be implemented by the GSNV in partnership with key stakeholders, so that people with a lived experience of genetic and rare conditions, influence and have leadership in health service decision making and delivery and their stories and narrative are heard.

Request access to videos using the form below

Lived Experiences Registration

This project is jointly managed by the Genetic Support Network Victoria (GSNV) and the Melbourne Genomics Health Alliance.

GSNV is a united voice for people living with genetic, rare and undiagnosed conditions, and those who support them. Melbourne Genomics is an alliance of leading hospitals, research and academic institutions, working with the Victorian Government to embed genomics in the state’s health system. We are working together to amplify the stories of people with genetic conditions.

These videos will be used to:

• show why accurate diagnosis is vital, thereby making the case for genomic medicine • demonstrate the value of Victoria’s investment in genomic medicine • highlight the importance of an informative, timely diagnosis and the impact it makes on families • train clinicians who work with people with genetic conditions
Are you interested in being kept up to date with the new 2022 video series?
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