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RVA News

  • Published On: 27 August 2024

    Rare Voices Australia Recap: Human Genetics Society of Australasia’s 47th Annual Scientific Meeting

    Rare Voices Australia’s (RVA) Education and Advocacy Manager, Louise Healy, and Research and Evaluation Manager, Dr Falak Helwani...

  • Published On: 27 August 2024

    Australia and the World Health Assembly Resolution on Rare Diseases

    Rare Diseases International (RDI) is working with its members, including Rare Voices Australia (RVA), to call for a World Health Assembly (WHA)...

  • Published On: 31 July 2024

    New Mental Health and Rare Disease Resources for Western Australian Consumers and Health Professionals

    Rare Voices Australia, with support from Western Australia’s (WA) Office of Population Health Genomics (OPHG), has progressed aspects...

  • Published On: 30 July 2024

    Public Hearing: Joint Standing Committee on the National Disability Insurance Scheme – Participant Experience in Rural, Regional and Remote Australia

    On 28 June 2024, Rare Voices Australia (RVA) was invited to a public hearing to present to the Joint Standing Committee...

  • Published On: 30 July 2024

    Newborn Bloodspot Screening Update: July 2024

    Newborn bloodspot screening (NBS) is an important program that supports the earliest possible diagnosis of some rare diseases...

  • Published On: 24 July 2024

    Launched: Department of Health and Aged Care’s Australian Health and Medical Research Workforce Survey

    In May 2024, the Hon Mark Butler MP, Minister for Health and Aged Care, announced the Australian Government’s commitment...

  • Published On: 27 June 2024

    Update: Review of the National Health and Medical Research Council Statement on Consumer and Community Involvement in Health and Medical Research

    The National Health and Medical Research Council (NHMRC) is currently reviewing the Statement on Consumer and Community...

  • Published On: 17 June 2024

    Department of Health and Aged Care Publishes Its ‘Newborn bloodspot screening expansion – Readiness assessment executive summary’

    To better understand Australian newborn bloodspot screening (NBS) programs, the Department of Health and Aged Care commissioned...

  • Published On: 29 May 2024

    Rare Voices Australia Stakeholder Survey

    Rare Voices Australia (RVA) is preparing for our annual Strategy Review session in July where, as an organisation, we discuss our focus areas and priorities for the future...

  • Published On: 15 May 2024

    Updated: 2024-2025 Federal Budget and Australians living with a rare disease

    Last night (Tuesday, 14 May), the Hon Dr Jim Chalmers MP (Treasurer of Australia) handed down the Albanese Government’s 2024-2025 Federal Budget...

  • Published On: 8 April 2024

    Rare Voices Australia Board Recruitment

    Rare Voices Australia (RVA) is the national peak body for the estimated two million Australians living with a rare disease. RVA provides a strong, unified voice to advocate...

  • Published On: 4 March 2024

    Highlights: 2024 Rare Voices Australia Rare Disease Day Parliamentary Event

    Rare Voices Australia (RVA) thanks everyone who attended our 2024 Rare Disease Day Parliamentary Event in Canberra on the rarest day of the year (29 February)...