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RVA News

  • 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...

  • Published On: 28 June 2022

    28 June is International Neonatal Screening Day

    Today (28 June) is International Neonatal Screening Day, a day that celebrates the birthday of Dr Robert Guthrie...

  • Published On: 20 June 2022

    Mental Health First Aid Training for Rare Voices Australia Partner Organisations

    Rare Voices Australia (RVA) is currently working on a mental health and wellbeing project based on recommendations in the National Strategic Action Plan...

  • 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: 31 May 2022

    RVA Education: The Changing Face of Newborn Bloodspot Screening – A Rare Disease Sector Forum

    Ahead of the Federal Election, RVA was excited to welcome the Australian Labor Party’s (ALP) commitment, if elected, to invest...

  • Published On: 30 May 2022

    Rare Disease Registry Audit: Key Findings and Project Update

    The much-awaited key findings from the Australian Rare Disease Registry Audit project, led by Monash University registry experts...

  • Published On: 20 May 2022

    Launched: A Guide for Rare Disease Organisation Leaders in Australia

    Rare disease organisations are an important part of the Australian rare disease community. These organisations can understand, capture and communicate...

  • Published On: 4 May 2022

    RVA is Hiring: Project Officer – Mental Health and Wellbeing (Maternity Leave Position)

    Rare Voices Australia (RVA) is looking to hire a Project Officer – Mental Health and Wellbeing (Maternity Leave Position)...