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RVA News

  • 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...

  • 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: 25 November 2021

    Final Report Tabled: Parliamentary Inquiry Into Approval Processes for New Drugs and Novel Medical Technologies in Australia

    The Standing Committee on Health, Aged Care and Sport (the Standing Committee) tabled its report...

  • Published On: 24 November 2021

    Time Sensitive: Share Your Experience With Patient Registry Data Interoperability

    As part of the Rare as One Project, The Chan Zuckerberg Initiative (CZI) is seeking information about registry interoperability. Responses are encouraged...

  • Published On: 24 November 2021

    Survey Opportunity: Audit of Australian Rare Disease Registries

    Rare Voices Australia (RVA) has engaged Monash University clinical registry experts, Professor Susannah Ahern and Dr Rasa Ruseckaite, to undertake an audit of Australian...

  • 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...