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RVA News

  • 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: 11 January 2024

    Update: Engagement with Three Consumer-Led Rare and Complex Disease Organisations – The Navigator Project

    Rare Voices Australia (RVA) is pleased to partner with Tuberous Sclerosis Australia (TSA), Mito Foundation and Crohn’s & Colitis Australia to implement the third...

  • Published On: 15 December 2023

    RVA Position Statement: ‘Government response – The New Frontier: Inquiry into approval processes for new drugs and novel medical technologies in Australia’

    On 30 November, the Australian Government published its response to The New Frontier...

  • Published On: 14 December 2023

    Disability Advocacy Review: December 2023

    This year saw the culmination of several substantial reviews of the disability landscape across Australia exploring the lived experience of people with disability...

  • 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...