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RVA News

  • 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)...

  • 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: 28 April 2022

    Meet Our 2022 Rare Voices Australia Ambassadors!

    In 2022, Rare Voices Australia (RVA) is celebrating 10 years of rare disease advocacy. RVA’s 10th Anniversary Ambassador Program (the Ambassador Program) is one of several initiatives...

  • Published On: 30 March 2022

    RVA Full Statement: 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: 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...