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RVA News

  • 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

    Rare Voices Australia and Research: 2023 in Review

    Rare Voices Australia’s (RVA) role in identifying evidence gaps and proactively partnering with researchers and other experts to address unmet areas of need...

  • 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: 16 November 2023

    Recap: Inaugural Queensland Parliamentary Event

    Rare Voices Australia (RVA) thanks everyone who attended our inaugural Queensland Parliamentary Event dedicated to people living with a rare disease...

  • 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: 31 October 2023

    Rare Voices Australia Partner Opportunity: Webinar – New Flagship Study on Preferences for Genomic Testing

    Rare Voices Australia (RVA) invites leaders of RVA Partner groups/ organisations to attend a webinar on Wednesday, 22 November 2023...

  • Published On: 31 October 2023

    Inaugural Queensland Parliamentary Event

    Rare Voices Australia (RVA) invites Queensland-based leaders of RVA Partner groups/organisations to the first-ever Queensland Parliamentary Event dedicated to people living with a 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: 19 September 2023

    Rare Voices Australia Is Hiring: Web Developer

    Rare Voices Australia (RVA) is seeking a talented web developer with experience in user interface (UI)/user experience (UX) design...

  • Published On: 15 September 2023

    Rare Voices Australia Statement: Aboriginal and Torres Strait Islander Voice to Parliament

    As the national peak body for Australians living with a rare disease, Rare Voices Australia (RVA) is dedicated to driving the best outcomes for Australians living with a rare disease...