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  • 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: 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: 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...

  • 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: 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: 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...

  • Published On: 27 June 2025

    Progressing Implementation of the National Strategy for Australia’s Rare Metabolic Disease Workforce: Exciting Developments for Metabolic Medicine

    The Royal Australasian College of Physicians (RACP), together with the Human Genetics Society of Australasia (HGSA)...