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RVA News

  • 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...

  • Published On: 30 June 2021

    RVA is Hiring: Project Officer – Western Australia

    The Australian Rare Disease Research Network (ARDRN) held its first virtual meeting on 18 September 2025, witRVA is looking for a Project Officer in Western Australia...

  • Published On: 29 June 2021

    Sneak Peek: Rare Awareness Rare Education (R.A.R.E) Portal for Rare Diseases Logo

    Rare Voices Australia (RVA) is excited to officially launch the logo for the Rare Awareness Rare Education (R.A.R.E) Portal for rare diseases...

  • Published On: 28 June 2021

    Rare Voices Australia Partners with the Western Australian Department of Health

    Rare Voices Australia (RVA) is pleased to partner with the Western Australian Department of Health (WADOH) on three projects to progress the implementation...