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RVA News

  • 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: 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: 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: 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: 30 November 2021

    RVA is Hiring: Resources and Information Officer

    Rare Voices Australia (RVA) is looking for a Resources and Information Officer to join our passionate and dedicated team! RVA is Australia’s national non profit peak body...

  • Published On: 30 November 2021

    Parliamentary Inquiry Position Statement: ‘The New Frontier – Delivering Better Health for All Australians’

    On 25 November 2021, the Standing Committee on Health, Aged Care and Sport (the Standing Committee) tabled...

  • Published On: 24 November 2021

    Recap: 2021 Virtual National Rare Disease Summit

    Thank you to those who attended Rare Voices Australia’s (RVA) 2021 Virtual National Rare Disease Summit (the Virtual Summit) on 12 November. The Virtual Summit brought...

  • Published On: 15 November 2021

    Systemic National Disability Insurance Scheme Advocacy – Expressions of Interest Sought

    Rare Voices Australia (RVA) has been engaging in ongoing systemic advocacy to seek pathways to ensure that the National Disability Insurance Scheme...

  • Published On: 29 September 2021

    Rare Metabolic Disease Workforce Study – September 2021 Activity Update

    ‘Sustainable systems and workforce’ is one of three foundation principles of the National Strategic Action Plan for Rare Diseases (the Action Plan)...