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RVA News

  • Published On: 24 September 2025

    RVA eNews September 2025

  • Published On: 23 September 2025

    Rare Voices Australia Submission: Draft Statement on Consumer and Community Involvement in Health and Medical Research

    Rare Voices Australia (RVA) recently provided input into the consultation on the draft Statement on Consumer...

  • Published On: 16 September 2025

    Newborn Bloodspot Screening Update: MPS I, MPS II and Pompe Disease

    The Medical Services Advisory Committee (MSAC) has published its advice on newborn bloodspot screening (NBS)...

  • Published On: 4 September 2025

    Interim Report Released: Health Technology Assessment Review Implementation Advisory Group

    The Hon Mark Butler MP, Minister for Health and Ageing and Minister for Disability and the National Disability Insurance Scheme...

  • Published On: 29 August 2025

    Rare Disease Disability Project News: August 2025

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

  • Published On: 28 August 2025

    Rare Disease Disability Advocacy Update – August 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: 27 August 2025

    Human Genetics Society of Australasia 48th Annual Scientific Meeting: Rare Voices Australia Recap

    Between 14–18 August 2025, Rare Voices Australia (RVA) attended the 48th Annual Scientific Meeting of the Human Genetics Society of Australasia...

  • Published On: 24 August 2025

    RVA eNews August 2025

  • Published On: 31 July 2025

    Rare Disease Disability Project News: July 2025

    In June, RVA Partner organisations were invited to apply for funding for RVA Partner Project Grants as part of the work being undertaken for the Rare Disease Disability Project (the Project)...

  • Published On: 29 July 2025

    Published: Australia’s Top 10 Rare Disease Research Priorities

    The Kids Research Institute Australia (formerly the Telethon Kids Institute) and Rare Voices Australia (RVA) have published Australia’s Top 10 Rare Disease Research Priorities...

  • Published On: 29 July 2025

    Invitation: Join the New Australian Rare Disease Research Network and Australia’s Top 10 Rare Disease Research Priorities Launch

    Rare Voices Australia (RVA) is facilitating the first meeting for the new Australian Rare Disease Research Network (ARDRN) on 18 September 2025...

  • Published On: 28 July 2025

    Communique: Long-Term Strategic Guidance of Australia’s Digital Health and Health Data Infrastructure

    On 5 June 2025, RVA attended a workshop co-hosted by Research Australia and Digital Health CRC. The workshop brought together key stakeholders...