Categories

  • Published On: 27 July 2026

    Update: Health Technology Assessment (HTA) Reform – July 2026

    The nationally codesigned Rare Disease Disability Toolkit (the Toolkit): Rare Voices Australia (RVA) continues to promote the first round of Toolkit...

  • Published On: 26 June 2026

    Update: Australian Rare Disease Research Network Meeting – June 2026

    The nationally codesigned Rare Disease Disability Toolkit (the Toolkit): Rare Voices Australia (RVA) continues to promote the first round of Toolkit...

  • Published On: 29 May 2026

    RVA Submission: National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

    The nationally codesigned Rare Disease Disability Toolkit (the Toolkit): Rare Voices Australia (RVA) continues to promote the first round of Toolkit...

  • Published On: 28 May 2026

    How the ‘Navigating Air Travel with Rare Disease Disability’ Toolkit Resource Is Making a Difference

    The nationally codesigned Rare Disease Disability Toolkit (the Toolkit): Rare Voices Australia (RVA) continues to promote the first round of Toolkit...

  • 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...

  • 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.

  • 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

    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: 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: 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...