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RVA News

  • Published On: 25 October 2021

    Australian Rare Disease Registry Audit: Project Update – August to October

    Limited data about rare diseases related to incidence and prevalence, natural history, epidemiology, impact, and treatment outcomes or a lack thereof, is driving a global emphasis...

  • Published On: 20 October 2021

    Launch of the first Parliamentary Friends of People with Rare and Undiagnosed Diseases in Western Australia

    Rare Voices Australia (RVA) was proud to attend the official launch of the first Parliamentary Friends of People with Rare and...

  • Published On: 19 October 2021

    Joint Standing Committee on the National Disability Insurance Scheme Parliamentary Inquiry: Independent Assessments Final Report Tabled

    On 19 October 2021, the Parliamentary Joint Standing Committee on the National Disability Insurance...

  • Published On: 13 October 2021

    New Parliamentary Senate Inquiry into Current Scheme Implementation and Forecasting for the National Disability Insurance Scheme

    The Joint Standing Committee on the National Disability Insurance Scheme (NDIS)...

  • Published On: 28 September 2021

    Recap: Health Technology Assessment Consumer Consultative Committee’s ‘Making Connections’ Symposium

    Rare Voices Australia (RVA) staff were pleased to attend the Health Technology Assessment Consumer Consultative...

  • Published On: 28 September 2021

    Australian Government Announces Five Year Strategic Agreements with the Medicines Industry

    On 7 September 2021, the Australian Government announced two new Strategic Agreements with Medicines Australia and the Generic and Biosimilar Medicines Association...

  • Published On: 20 September 2021

    Rare Voices Australia is Hiring: Operations and Compliance Manager

    RVA is looking for an Operations and Compliance Manager ​to join our passionate and dedicated team...

  • Published On: 17 September 2021

    Rare Voices Australia is Hiring: Project Officer – Mental Health and Wellbeing

    RVA is looking for a Project Officer – Mental Health and Wellbeing ​to join our passionate and dedicated team...

  • Published On: 16 September 2021

    Public Consultation Open: National Disability Insurance Scheme Legislation Reforms

    The Australian Government is proposing changes to National Disability Insurance Scheme (NDIS) legislation with the goal to make processes easier...

  • Published On: 13 September 2021

    Time Sensitive RVA Partner Opportunity: Influence Research and Interact with the Global Rare Disease Community

    The EURORDIS Rare Barometer Project is developing a global survey on diagnosis. EURORDIS is working...

  • Published On: 15 August 2021

    Newborn Bloodspot Screening Update: Victoria

    ongratulations to RVA Partner, Congenital Adrenal Hyperplasia Support Group Australia, for their successful advocacy on behalf of their community resulting in...

  • Published On: 12 August 2021

    Formation of the first Parliamentary Friends of People with Rare and Undiagnosed Diseases in Western Australia

    Rare Voices Australia (RVA) welcomes the formation of the first Parliamentary Friends of People with Rare and Undiagnosed Diseases...