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RVA News

  • Published On: 29 August 2024

    The Navigator Project: Progress Update – August 2024

    As the lead consortia member on The Navigator Project, which is funded by the Department of Health and Aged Care, Rare Voices Australia (RVA)...

  • Published On: 29 August 2024

    Revised Australian Framework for National Clinical Quality Registries (2024) Released

    The Australian Commission on Safety and Quality in Health Care (the Commission) has released the revised Australian Framework for National Clinical Quality Registries...

  • 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: 28 June 2024

    Rare Disease Disability Advocacy Update: June 2024

    June has been a busy month for Rare Voices Australia (RVA) in the disability space with engagement with government on several of the key disability reform initiatives...

  • 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: 30 May 2024

    Rare Disease Disability Advocacy Update: May 2024

    As noted in Rare Voices Australia’s (RVA) March 2024 Disability Advocacy Update, a comprehensive disability reform agenda is underway across Commonwealth and State Governments...