While there is large variation among the over 7,000 different rare diseases, people living with a rare disease often face common challenges. Below, you’ll find several links to general information that may be useful for Australians living with a rare disease, including caregivers.
Updated: 7 July, 2025
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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