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RVA News

  • 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...

  • Published On: 9 August 2022

    Webinar for Health Consumers and Consumer Advocates with the Hon Mark Butler MP: Consumers Health Forum of Australia

    The Consumers Health Forum of Australia (CHF) hosted a webinar on Friday 5 August with the Hon Mark Butler MP...

  • Published On: 3 August 2022

    RVA Welcomes Announcement That Pharmaceutical Benefits Scheme Listed Treatment for Spinal Muscular Atrophy (SMA) Will Be Extended to Adults

    Rare Voices Australia (RVA) welcomes the Hon Mark Butler MP’s announcement that, from 1 August 2022, the Pharmaceutical Benefits Scheme...

  • Published On: 27 July 2022

    RVA Partner Organisations: November Mental Health First Aid Training Accreditation

    Rare Voices Australia (RVA) is working with Mental Health First Aid (MHFA) Australia to offer RVA Partner organisations the opportunity...

  • Published On: 26 July 2022

    Update: Australian Commission on Safety and Quality in Health Care’s National One Stop Shop and Clinical Trials Front Door

    For many people living with a rare disease, participation in clinical trials is the only way to access treatment...

  • Published On: 26 July 2022

    Update: Progress Towards a National Strategy for Australia’s Rare Metabolic Diseases Workforce

    In February 2022, Rare Voices Australia (RVA) and Equity Economics and Development Partners launched the Rare Metabolic Disease Workforce...

  • Published On: 22 July 2022

    RVA is Hiring: Education Project Officer

    Rare Voices Australia (RVA) is excited to be expanding our team! We are looking to recruit an Education Project Officer...

  • Published On: 30 June 2022

    RVA is Hiring: Communications and Administrative Officer

    Rare Voices Australia (RVA) is excited to be expanding our team! We are looking to recruit a communications and administrative all-rounder...

  • Published On: 29 June 2022

    National Disability Insurance Agency (NDIA) Community Update

    The National Disability Insurance Agency (NDIA) Co-design and Engagement Team would like to invite you to participate in their monthly...