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RVA News

  • 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: 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: 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: 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: 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...