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RVA News

  • Published On: 17 June 2022

    Queensland Government to Expand Its Newborn Screening Program to Include Spinal Muscular Atrophy (SMA) and Severe Combined Immunodeficiency (SCID)

    Rare Voices Australia (RVA) welcomes the Queensland Government’s announcement...

  • Published On: 3 May 2022

    Victorian Budget 2022-23 Newborn Bloodspot Screening Update

    Today’s Victorian 2022-23 Budget included funding to expand the state’s newborn screening program. In recognition of Rare Voices Australia’s (RVA)...

  • Published On: 30 March 2022

    Ataxia-Telangiectasia Clinical Trial Launch

    Rare Voices Australia (RVA) attended the launch of a world-first clinical trial for people living with Ataxia-Telangiectasia (A-T) at Wesley Medical Research in Brisbane...

  • Published On: 29 March 2022

    Federal Budget 2022-23 and Australians living with a rare disease

    On Tuesday, 29 March 2022, the Hon Josh Frydenberg MP (Treasurer of Australia) announced the Morrison Government’s 2022-23 Federal Budget...

  • Published On: 28 February 2022

    Launched: ‘Rare Metabolic Disease Workforce White Paper: Towards a Strengthened Rare Disease Workforce for Australia’

    This Rare Disease Day (28 February 2022), Rare Voices Australia (RVA) launched the much-anticipated...

  • Published On: 23 February 2022

    Global Roadmap for Sanfilippo Syndrome Therapies Launched

    Rare Voices Australia (RVA) congratulates RVA Partner, Sanfilippo Children’s Foundation Australia, for their leading role in the development and delivery...

  • 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...