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  • Published On: 13 July 2023

    Rare Voices Australia Leads Successful Medical Services Advisory Committee Application Working In Collaboration With Tuberous Sclerosis Australia

    The Medical Services Advisory Committee (MSAC) has published the successful outcome of Application No. 1702 – Abdominal MRI for rare genetic conditions...

  • Published On: 29 June 2023

    Rare Voices Australia Partners With Sydney Local Health District to Better Support Australians Living With a Rare Disease

    Rare Voices Australia (RVA) is pleased to partner with the Sydney Local Health District (SLHD) to better support the estimated two million Australians living with a rare disease...

  • Published On: 29 June 2023

    New Rare Disease Project ECHO® Workshop Sessions for Health Professionals

    By popular demand, five additional Project ECHO® workshop sessions for health professionals have been announced....

  • Published On: 29 June 2023

    RVA Education: Applying Mental Health First Aid in a Rare Disease Context

    In 2022, Rare Voices Australia (RVA) partnered with Mental Health First Aid (MHFA) Australia to commence work on a mental health and wellbeing project...

  • 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)...