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Published On: 26 May 2026
Update: Australian Rare Disease Research Network Meeting – May 2026
The first Australian Rare Disease Research Network (ARDRN) virtual meeting for 2026 was held in May. The ARDRN has grown to over 120 members, including...
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Published On: 25 May 2026
Published: NHMRC Statement on Consumer and Community Involvement in Health and Medical Research
The National Health and Medical Research Council (NHMRC) and the Consumers Health Forum of Australia (CHF) have released the new Statement on Consumer and Community Involvement in Health and Medical Research (the Statement).
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Published On: 15 May 2026
Federal Budget 2026-27 and Australians Living with a Rare Disease
Stakeholder Reference Group (SRG) members met for the second time this year in April. The SRG continues to provide lived-experience guidance for the Rare Disease Disability Project.
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Published On: 27 April 2026
RVA eNews March 2026
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Published On: 27 April 2026
RVA eNews February 2026
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Published On: 27 April 2026
RVA eNews January 2026
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Published On: 27 April 2026
RVA eNews December 2025
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Published On: 27 April 2026
RVA eNews November 2025
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Published On: 27 April 2026
RVA eNews October 2025
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Published On: 27 April 2026
RVA eNews September 2025
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Published On: 27 April 2026
RVA eNews August 2025
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Published On: 27 April 2026
RVA eNews July 2025
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Updated: 28 July, 2026

DISCLAIMER: The information on this website 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.

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