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RVA News

  • Published On: 31 August 2023

    Call for Expressions of Interest: Engagement with Three Consumer-Led Rare and Complex Disease Organisations

    Rare Voices Australia (RVA) is progressing work on The Navigator Project, which was named the recipient of the Rare and Complex Disease Telehealth Nurse Program grant...

  • Published On: 29 August 2023

    Evaluation of the Medical Research Future Fund Clinical Trials Activity Final Report

    The Health and Medical Research Office’s (HMRO) Performance and Evaluation Section within the Department of Health and Aged Care...

  • 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: 26 July 2023

    Genetic Services of Western Australia Survey: Closes 1 September 2023

    The Government of Western Australia Department of Health and the Genetic Services of Western Australia (GSWA) invite people to participate...

  • 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...