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RVA News

  • Published On: 10 December 2021

    Update: United Nations General Assembly Resolution on Persons Living with a Rare Disease and their Families

    Throughout 2021, the global rare disease community has been advocating for the United Nations General Assembly (UNGA)...

  • Published On: 2 December 2021

    The Hon Greg Hunt MP Announces Retirement From Politics

    The Hon Greg Hunt MP has announced that he will retire from politics at the next election after more than 20 years in Federal Parliament...

  • 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: 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: 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...