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RVA News

  • 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 January 2024

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

    The Joint Standing Committee on the National Disability Insurance Scheme (NDIS) has initiated a new inquiry into the NDIS...

  • Published On: 25 January 2024

    Health Technology Assessment Policy and Methods Review: Consultation 2 Commences

    As part of Medicine Australia’s five-year Strategic Agreement with the Federal Government, an independent review of Australia’s health technology assessment (HTA)...

  • Published On: 14 December 2023

    New Government Consultation on the Use of Genetic Testing Results in Life Insurance Underwriting

    In November 2023, Assistant Treasurer, the Hon Stephen Jones MP, announced a national consultation on the issue of genetic discrimination...

  • Published On: 13 December 2023

    Launched: Involve Australia’s Guidelines for Community Involvement in Genomic Research

    On 6 December 2023, the Involve Australia project, coordinated by Australian Genomics, launched Guidelines for Community Involvement...

  • Published On: 6 December 2023

    New Education Materials for the Aboriginal and Torres Strait Islander, Multicultural and Regional, Remote and Rural Communities

    To assist with implementation of the Australian Government’s National Strategic Action Plan for Rare Diseases, Rare Voices Australia (RVA)...

  • Published On: 22 November 2023

    November Health Ministers’ Meeting and Newborn Bloodspot Screening

    On 10 November 2023, Health Ministers from all Australian governments met to discuss a range of important issues for Australia’s healthcare system...

  • Published On: 31 October 2023

    New Medical Research Future Fund (MRFF) Grant Opportunities Relevant to Rare Disease

    Several Medical Research Future Fund (MRFF) research grant opportunities have recently opened that are relevant to rare disease...

  • Published On: 26 October 2023

    Newborn Bloodspot Screening Update – October 2023

    As the national peak body for Australians living with a rare disease, Rare Voices Australia (RVA) welcomes the recent announcements from the Department of Health and Aged Care...

  • Published On: 29 August 2023

    Evaluation of the Medical Research Future Fund Clinical Trials Activity Final Report

    The Health and Medical Research Office’s (HMRO) Performance and Evaluation Section within the Department of Health and Aged Care...

  • Published On: 26 July 2023

    Genetic Services of Western Australia Survey: Closes 1 September 2023

    The Government of Western Australia Department of Health and the Genetic Services of Western Australia (GSWA) invite people to participate...