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RVA News

  • 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...

  • Published On: 9 June 2021

    Newborn Bloodspot Screening Update: Changes to the Assessment Process for Nominated Conditions

    The Department of Health has announced changes to the assessment process for nominated conditions conducted...

  • Published On: 1 June 2021

    ABC Nightlife Rare Diseases Segment

    Chair of Rare Voices Australia’s (RVA) Scientific and Medical Advisory Committee, Professor Adam Jaffé, and Heather Renton, Chief Executive Officer of RVA Partner...

  • Published On: 31 May 2021

    Andrew Bannister wins the Masonic Care WA/Freemasons WA Community Service and Volunteering Award and the People’s Choice Award

    Rare Voices Australia (RVA) congratulates rare disease advocate, Andrew Bannister, who has been announced...

  • Published On: 27 May 2021

    Australian Clinical Trials Alliance: Have your say on secondary use of data in clinical research

    Interested in secondary use of data for Australian research? Invitation to take part in Australian Clinical...

  • Published On: 27 May 2021

    Victoria Enters Seven Day Lockdown

    From midnight 27 May 2021, Victoria will enter a seven day lockdown...

  • Published On: 14 May 2021

    United Nations General Assembly Resolution on Persons Living with a Rare Disease and their Families

    The global community of persons living with a rare disease, their families, and civil society organisations, with the support...

  • Published On: 13 May 2021

    MRFF Rare Cancers Rare Diseases Unmet Need grant open

    A new Medical Research Future Fund (MRFF) Rare Cancers Rare Diseases Unmet Need grant has opened...

  • Published On: 12 May 2021

    Federal Budget 2021-22 and Australians living with a rare disease

    On Tuesday 11 May 2021, Treasurer Josh Frydenberg announced the Morrison Government’s 2021-22 Federal Budget...

  • Published On: 6 May 2021

    Young Australians living with rare diseases defy the odds but need better support, expert says

    Young Australians living with rare diseases can face significant social, employment and educational barriers in life...