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RVA News

  • 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...

  • Rare Disease Disability Project News
    Published On: 28 March 2024

    Rare Disease Disability Advocacy Update: March 2024

    A comprehensive disability reform agenda is underway across Commonwealth and State Governments, including transformation of disability policy...

  • 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)...

  • Published On: 16 February 2024

    2024 Rare Disease Day Media Pack

    Rare Disease Day is the globally coordinated movement for rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies...

  • 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: 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...