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  • 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...

  • Published On: 2 March 2022

    Rare Voices Australia’s 10th Anniversary Ambassador Program

    In 2022, Rare Voices Australia (RVA) is celebrating 10 years of rare disease advocacy. Thank you to everyone who contributed to RVA’s work over the last decade...

  • 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...

  • Published On: 4 February 2022

    2022 Rare Disease Day Update and Media Pack

    Rare Disease Day will be marked on 28 February 2022. As reported in December eNews, Rare Voices Australia (RVA) has been actively contributing to the development of the global Rare Disease Day campaign...