Welcome to the RARE Help page. Since 2012, Rare Voices Australia (RVA) has been advocating for the best outcomes for Australians living with a rare disease. This RARE Help page has been codesigned and evaluated by Australians living with a rare disease. The below queries are based on the most common questions RVA receives from people living with a rare disease as the national peak body. More resources will be added to this page over time.
Updated: 10 April, 2026
DISCLAIMER: The information on the Rare Awareness Rare Education (RARE) Portal is intended for educational purposes only and does not replace professional advice.
Rare diseases typically display a high level of symptom complexity and variability. Individuals diagnosed with the same rare disease may be impacted differently and each person’s experience is unique. Please seek support from qualified healthcare professionals to learn more about the most suitable care and support options for you. See our Terms of Use for more information.
Development of the RARE Portal has been funded by the Australian Government and is one of the key deliverables of the National Strategic Action Plan for Rare Diseases.
Rare Voices Australia acknowledges Aboriginal and Torres Strait Islander people as the Traditional Owners of Country throughout Australia and as a priority population of the rare disease sector. We pay our respects to Elders–past, present and emerging.
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