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RVA News

  • Published On: 13 September 2021

    Time Sensitive RVA Partner Opportunity: Influence Research and Interact with the Global Rare Disease Community

    The EURORDIS Rare Barometer Project is developing a global survey on diagnosis. EURORDIS is working...

  • Published On: 27 August 2021

    Rare Voices Australia Research Update: April – July 2021

    Rare Voices Australia (RVA) has continued investing heavily in rare disease research in 2021 to gather evidence for policy reform that leads to better outcomes for Australians living with a rare disease...

  • Published On: 18 August 2021

    Patient or Carer Experience Survey: Strengthening the Rare Disease Healthcare Workforce in Australia

    Rare Voices Australia (RVA) has engaged Equity Economics and Development Partners to undertake a rare metabolic disease workforce study...

  • Published On: 15 August 2021

    Newborn Bloodspot Screening Update: Victoria

    ongratulations to RVA Partner, Congenital Adrenal Hyperplasia Support Group Australia, for their successful advocacy on behalf of their community resulting in...

  • Published On: 12 August 2021

    Formation of the first Parliamentary Friends of People with Rare and Undiagnosed Diseases in Western Australia

    Rare Voices Australia (RVA) welcomes the formation of the first Parliamentary Friends of People with Rare and Undiagnosed Diseases...

  • Published On: 5 August 2021

    Newborn Bloodspot Screening Update: Western Australia

    Rare Voices Australia (RVA) welcomes the Western Australian (WA) Government’s commitment to begin the implementation process to add congenital adrenal hyperplasia...

  • Published On: 28 July 2021

    Get involved with the Australian Aplastic Anaemia and Other Bone Marrow Failure Syndromes Registry

    Thanks to the more than 250 Australians with bone marrow failure syndromes who have registered with the Australian Aplastic Anaemia...

  • Published On: 28 July 2021

    Rare Voices Australia Education and Mentoring Update: May – July 2021

    Rare Voices Australia’s (RVA) Education Program and mentoring support is tailored towards the needs of individual RVA Partner organisations and their unique strategic goals and aims...

  • Published On: 27 July 2021

    Rare Disease – Support, Education and Training Grant Update

    Rare Voices Australia (RVA) is excited to be a member of the consortium, led by the University of New South Wales (UNSW), that was a recipient of the Australian Government’s...

  • Published On: 12 July 2021

    National Disability Insurance Scheme Independent Assessments Abandoned

    Rare Voices Australia (RVA) welcomes the Federal Government’s announcement that National Disability Insurance Scheme (NDIS) independent assessments...

  • Published On: 2 July 2021

    Medical Research Future Fund (MRFF) Grant Success!

    Rare Voices Australia (RVA) congratulates the 17 researchers who, through the Genomics Health Futures Mission, will receive a share of $46.5 million for genomics research...

  • Published On: 30 June 2021

    RVA Partner Education Webinar Series – Rare Disease Research in Australia

    Rare Voices Australia (RVA) is hosting an education webinar series for RVA Partner organisations that focus on research...