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RVA News

  • Published On: 27 February 2026

    Rare Disease Disability Project News: February 2026

    Below are the updates for the Rare Disease Disability Project for February 2026...

  • Published On: 30 January 2026

    Rare Disease Disability Project News: January 2026

    Below are the updates for the Rare Disease Disability Project for January 2026...

  • 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: 28 November 2025

    Rare Disease Disability Project News: November 2025

    Below are the updates for the Rare Disease Disability Project for August 2025...

  • 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...

  • Published On: 30 October 2025

    Rare Disease Disability Project News: October 2025

    Below are the updates for the Rare Disease Disability Project for October 2025...

  • Published On: 29 October 2025

    Rare Disease Disability Advocacy Update – October 2025

    Rare Voices Australia (RVA) has been engaging in several key disability initiatives throughout 2025 to advocate on behalf of Australians living with rare disease disability...

  • Published On: 24 October 2025

    RVA eNews June 2025

  • Published On: 22 October 2025

    Rare Voices Australia’s Submission: Draft National Health and Medical Research Strategy

    Rare Voices Australia (RVA) congratulates Rosemary Huxtable AO PSM, Chair of the National Health and Medical Research Strategy (National Strategy), and the broader development team on releasing Australia’s first-ever...

  • Published On: 30 September 2025

    Rare Disease Disability Project News: September 2025

    The Stakeholder Reference Group (SRG) met this month and approved the design principles for the nationally codesigned Rare Disease Disability Toolkit (the Toolkit) and the resource topics for Stage 1 of the Toolkit. Stage 1 resources will be available on RVA’s website in December 2025...

  • Published On: 25 September 2025

    Inaugural Australian Rare Disease Research Network Meeting

    The Australian Rare Disease Research Network (ARDRN) held its first virtual meeting on 18 September 2025, with 38 rare disease researchers from a range of jurisdictions...