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RVA News

  • Published On: 29 June 2023

    ‘Hope in Clinical Trials: Advancing Research for Rare Diseases’: Parliamentary Friends of People with Rare and Undiagnosed Diseases – Western Australia

    Rare Voices Australia (RVA) was pleased to contribute to a Parliamentary Event on 19 May hosted by the Parliamentary Friends of People with Rare...

  • Published On: 27 June 2023

    RVA Education: Facebook Groups and Social Media Risk Training for Rare Disease Organisations

    Social media can be a powerful tool for rare disease groups/organisations. It gives small, geographically dispersed rare disease communities...

  • Published On: 23 June 2023

    RVA Education Webinar – ‘Expanding Newborn Bloodspot Screening: Progress Made and Next Steps’

    On 13 June 2023, the Department of Health and Aged Care updated its website to state they are “working with states and territories to expand...

  • Published On: 1 June 2023

    Grant Update: Rare and Complex Disease Telehealth Nurse Program

    Rare Voices Australia (RVA) is pleased to be the lead consortium partner on The Navigator Project, which has been named the recipient of the Rare...

  • Published On: 11 May 2023

    2023 Status Report: Implementing the National Strategic Action Plan for Rare Diseases

    The Australian Government’s National Strategic Action Plan for Rare Diseases (the Action Plan), launched in 2020, is the first nationally coordinated effort...

  • Published On: 10 May 2023

    Rare Voices Australia Statement: 2023-24 Federal Budget

    Equitable access to health technology is a key priority of the Australian Government’s National Strategic Action Plan for Rare Diseases (the Action Plan)...

  • Published On: 26 April 2023

    Health Technology Assessment Policy and Methods Review: Rare Disease Sector Webinar

    Equitable access to health technology is a key priority of the Australian Government’s National Strategic Action Plan for Rare Diseases (the Action Plan)...

  • Published On: 12 April 2023

    Public Consultation 1 Commences: Health Technology Assessment (HTA) Policy and Methods Review

    The Department of Health and Aged Care has advised that the first round of public consultation for the Health Technology Assessment (HTA)...

  • Published On: 29 March 2023

    Published: Principles for consumer involvement in research funded by the Medical Research Future Fund (MRFF) – March 2023

    In March, the Australian Government Department of Health and Aged Care published Principles for consumer involvement...

  • Published On: 29 March 2023

    Launched: ‘National Strategy for Australia’s Rare Metabolic Disease Workforce’

    One year on from the launch of the Rare Metabolic Disease Workforce White Paper: Towards a Strengthened Rare Disease Workforce for Australia...

  • Published On: 29 March 2023

    Launched: Rare Awareness Rare Education (RARE) Portal

    As the national peak body for Australians living with a rare disease, Rare Voices Australia (RVA) is leading the collaborative development of the Rare Awareness Rare Education (RARE) Portal...

  • Published On: 27 March 2023

    Rare Voices Australia Is Hiring: Communications and Engagement Officer

    Rare Voices Australia (RVA) is looking to recruit a Communications and Engagement Officer...