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RVA News

  • 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...

  • Published On: 13 January 2022

    Expressions of Interest Sought: Rare Awareness, Education, Support and Training Stakeholder Reference Group

    Do you have lived experience of rare disease? Are you actively connected...

  • Published On: 16 December 2021

    Systemic National Disability Insurance Scheme Advocacy: National Disability Insurance Agency Roundtable

    Rare Voices Australia (RVA) has continued to actively advocate for systemic improvements to the National Disability Insurance Scheme (NDIS)...

  • Published On: 15 December 2021

    Board Positions Available: Rare Voices Australia

    Rare Voices Australia (RVA) is seeking non-executive directors to join the RVA Board. Successful applicants will bring experience, skills and capabilities that contribute to the governance of RVA...

  • Published On: 10 December 2021

    Update: United Nations General Assembly Resolution on Persons Living with a Rare Disease and their Families

    Throughout 2021, the global rare disease community has been advocating for the United Nations General Assembly (UNGA)...

  • Published On: 8 December 2021

    Introducing RVA’s New Online Education Portal

    Since the launch of the National Strategic Action Plan for Rare Diseases (the Action Plan) in February 2020, Rare Voices Australia’s (RVA) Mentorship and Education Program...

  • Published On: 2 December 2021

    The Hon Greg Hunt MP Announces Retirement From Politics

    The Hon Greg Hunt MP has announced that he will retire from politics at the next election after more than 20 years in Federal Parliament...