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RVA News

  • Published On: 30 November 2021

    Parliamentary Inquiry Position Statement: ‘The New Frontier – Delivering Better Health for All Australians’

    On 25 November 2021, the Standing Committee on Health, Aged Care and Sport (the Standing Committee) tabled...

  • Published On: 25 November 2021

    Final Report Tabled: Parliamentary Inquiry Into Approval Processes for New Drugs and Novel Medical Technologies in Australia

    The Standing Committee on Health, Aged Care and Sport (the Standing Committee) tabled its report...

  • Published On: 24 November 2021

    Time Sensitive: Share Your Experience With Patient Registry Data Interoperability

    As part of the Rare as One Project, The Chan Zuckerberg Initiative (CZI) is seeking information about registry interoperability. Responses are encouraged...

  • Published On: 24 November 2021

    Survey Opportunity: Audit of Australian Rare Disease Registries

    Rare Voices Australia (RVA) has engaged Monash University clinical registry experts, Professor Susannah Ahern and Dr Rasa Ruseckaite, to undertake an audit of Australian...

  • Published On: 24 November 2021

    Recap: 2021 Virtual National Rare Disease Summit

    Thank you to those who attended Rare Voices Australia’s (RVA) 2021 Virtual National Rare Disease Summit (the Virtual Summit) on 12 November. The Virtual Summit brought...

  • Published On: 23 November 2021

    Update: Parliamentary Inquiry Into Approval Processes for New Drugs and Novel Medical Technologies in Australia

    The Standing Committee on Health, Aged Care and Sport (the Standing Committee) intend to table the Parliamentary...

  • Published On: 15 November 2021

    Systemic National Disability Insurance Scheme Advocacy – Expressions of Interest Sought

    Rare Voices Australia (RVA) has been engaging in ongoing systemic advocacy to seek pathways to ensure that the National Disability Insurance Scheme...

  • 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: 29 September 2021

    Rare Metabolic Disease Workforce Study – September 2021 Activity Update

    ‘Sustainable systems and workforce’ is one of three foundation principles of the National Strategic Action Plan for Rare Diseases (the Action Plan)...