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  • Published On: 23 April 2026

    National Disability Insurance Scheme Reset Must Safeguard People with Rare Disease Disability

    As the national peak body for Australians living with a rare disease, Rare Voices Australia (RVA) acknowledges the Australian Government’s intent to...

  • Published On: 31 March 2026

    Medical Research Future Fund (MRFF) – Missions Program Evaluation

    In December 2025, the Department of Health, Disability and Ageing (the Department) commenced public consultation on the evaluation of the Medical Research Future Fund (MRFF) Research Missions Program...

  • Published On: 31 March 2026

    World Economic Forum Report: Making Rare Diseases Count: How Better Data Can Unlock a Multitrillion-Dollar Opportunity

    In February 2026, the World Economic Forum published a seminal white paper entitled, Making Rare Diseases Count...

  • Published On: 31 March 2026

    EURORDIS – Rare Barometer Australian Factsheets

    EURORDIS shared factsheets with RVA presenting Australian findings from three Rare Barometer surveys.

  • Published On: 31 March 2026

    Newborn Bloodspot Screening Update: X-Linked Adrenoleukodystrophy (X-ALD)

    In December 2025, Health Ministers acknowledged to screen all newborn babies for X-ALD.

  • Published On: 31 March 2026

    Rare Disease Disability Advocacy Update: January – March 2026

    Rare Voices Australia (RVA) continues to advocate for Australians living with rare disease disability through engagement in key disability reform initiatives...

  • Published On: 27 March 2026

    New Framework Launches: ‘Recognising Consumers’ Contributions to Health Research’

    Research Australia, in collaboration with the National Centre for Epidemiology and Population Health at the Australian National University (ANU)...

  • Published On: 19 March 2026

    Highlights: 2026 Rare Disease Day Parliamentary Event

    Thank you to everyone who attended Rare Voices Australia’s (RVA) Rare Disease Day Parliamentary Event on 2 March 2026. Hosted by the Parliamentary Friends of Australians...

  • Published On: 23 February 2026

    2026 Rare Disease Day Landmark Illuminations

    In Australia, landmark illuminations are coordinated by passionate volunteers. Download the current list of Australian landmarks that will be illuminating for 2026 Rare Disease Day.

  • Published On: 28 January 2026

    Published: Consultation Report for the Review of the 2016 Statement on Consumer and Community Involvement in Health and Medical Research (2025)

    In 2024 and 2025, Rare Voices Australia (RVA) contributed to the review of the 2016 Statement on Consumer and...

  • Published On: 18 December 2025

    Highlights: 2025 Rare Disease Disability Network Showcase

    On 2 December 2025, Rare Voices Australia (RVA) facilitated the inaugural Rare Disease Disability Network Showcase (the Showcase) in Brisbane, ahead of the International Day of People...

  • Published On: 27 November 2025

    Rare Disease Disability Advocacy Update – November 2025

    Rare Voices Australia (RVA) continues to advocate for Australians living with rare disease disability through engagement in key disability reform initiatives...