Genetic Undiagnosed and Rare Disease Mental Health Working Group

A Mental Health Working Group (MHWG)  to support those living with, and caring for,  people with a genetic, undiagnosed or rare disease (GUARD) was created in 2020 with the support of the GSNV. The group is made up of  those with lived experience, patient support group leaders, those with careers in research and mental health policy,  and clinical mental health experience.


The GUaRD MHWG Vision:

All Australians in the genetic, undiagnosed and rare disease communities are proactively supported to achieve mental health and wellbeing over their life course.

The GUaRD MHWG Mission:

Drive the recognition and inclusion of mental health and wellbeing support as part of  integrated holistic healthcare for all including those who use ways other than speech to communicate, indigenous, remote and other key vulnerable sub-groups of our community.

Provide direction and a focus for a GUaRD Community mental health voice, advocating for systemic change in recognition and prevention, and mental health and wellbeing activities, services and supports.

Source and develop pathways and practical resources, targeting and supporting the unique needs of the GUaRD community.

Align with the National Strategic Action Plan for Rare Disease and be consistent with other relevant national and state policies.

The groups key strategic plans and actions to be undertaken from 2021-2023, can be found in detail on the  GuARD Strategic Action Plan 2021-23 document:

 The GUaRD MHWG  Member Biographies 



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