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RVA News

  • Published On: 18 January 2023

    Expressions of Interest: Consumer Representatives With Lived Experience of a Genetic Condition and/or the Genetic Services of Western Australia

    Western Australia’s (WA) Department of Health recently released the WA Genomics Strategy...

  • Published On: 20 December 2022

    Refreshed National Medicines Policy (NMP) Delivered to the Australian Government

    The Hon Mark Butler MP, Minister for Health and Aged Care, has announced the updated National Medicines Policy (NMP)...

  • Published On: 9 December 2022

    Reflections From the 2022 Annual Scientific Meeting for the Human Genetics Society of Australasia (HGSA)

    Held from 24-27 November 2022, the 45th Annual Scientific Meeting for the Human Genetics Society of Australasia...

  • Published On: 1 December 2022

    Recap: 2022 National Rare Disease Summit

    Thank you to everyone who joined us in-person and virtually at Rare Voices Australia’s (RVA) 2022 National Rare Disease Summit (the Summit)...

  • Published On: 30 November 2022

    RVA Education: Expansion of Newborn Bloodspot Screening Public Consultation

    On 11 November 2022, at Rare Voices Australia’s (RVA) National Rare Disease Summit, the Hon Mark Butler MP, Minister for Health and Aged Care, announced...

  • Published On: 23 November 2022

    First Ever Global Consensus Clinical Care Guidelines for Sanfilippo Syndrome

    The first-ever global consensus clinical care guidelines (guidelines) for Sanfilippo Syndrome have been published. RVA Partner Sanfilippo Children’s Foundation...

  • Published On: 26 October 2022

    Rare Voices Australia Statement: Budget October 2022-23

    On Tuesday, 25 October 2022 the Hon Dr Jim Chalmers MP (Treasurer of Australia) announced the Albanese Government’s October 2022-23 Federal Budget...

  • Published On: 21 October 2022

    Parliamentary Event: Parliamentary Friends of People with Rare and Undiagnosed Diseases in Western Australia

    Rare Voices Australia’s (RVA) Chief Executive Officer, Nicole Millis, was pleased to attend a Parliamentary Event in Western Australia (WA) on 19 October...

  • Published On: 29 September 2022

    Sector-Wide Activity Scan: National Strategic Action Plan for Rare Diseases Implementation

    The Australian Government’s National Strategic Action Plan for Rare Diseases (the Action Plan) was launched...

  • Published On: 5 September 2022

    Rare Voices Australia Parliamentary Event – 5 September 2022

    Rare Voices Australia (RVA) thanks everyone who attended our Parliamentary Event in Canberra today hosted by the Chair of the Standing Committee...

  • Published On: 31 August 2022

    RVA Welcomes Equity of Access for Australians Living with Phenylketonuria (PKU)

    RVA welcomes the announcement that the Pharmaceutical Benefits Scheme (PBS) listed treatment for Phenylketonuria (PKU)...

  • Published On: 19 August 2022

    National Medicines Policy Review Resumes

    Rare Voices Australia (RVA) welcomes the resumption of the National Medicines Policy (NMP) Review. Finalisation of the NMP Review was extended...