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RVA News

  • Published On: 29 August 2023

    Rare Voices Australia’s Submission on the Future Governance and Administration of Australian Health and Medical Research Funding

    Combined, the National Health and Medical Research Council’s Medical Research Endowment Fund (MREA) and the Medical Research Future Fund (MRFF)...

  • Published On: 28 August 2023

    Medical Research Future Fund (MRFF) Grant Success for Rare Disease

    One of Rare Voices Australia’s (RVA) formal research partnerships was chosen for funding under the Medical Research Future Fund (MRFF)...

  • Published On: 27 August 2023

    National Disability Insurance Scheme (NDIS) Advocacy Update: August 2023

    As the national peak body for Australians living with a rare disease, Rare Voices Australia (RVA)...

  • Published On: 15 August 2023

    Louise Healy, RVA’s Education and Advocacy Manager, Appointed to Expert Advisory Group on Genomics Australia

    The Department of Health and Aged Care has announced the Expert Advisory Group (EAG) on Genomics Australia, a new national genomics body...

  • Published On: 31 July 2023

    Launched: Recommendations for a National Approach to Rare Disease Data

    Rare Voices Australia (RVA) and Monash University have published Recommendations for a National Approach to Rare Disease Data...

  • 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

    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: 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...