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RVA News

  • Published On: 29 September 2021

    Rare Metabolic Disease Workforce Study – September 2021 Activity Update

    ‘Sustainable systems and workforce’ is one of three foundation principles of the National Strategic Action Plan for Rare Diseases (the Action Plan)...

  • 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: 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: 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...

  • 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: 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...

  • Published On: 27 April 2021

    Parents of first Aussie child diagnosed with rare disease to crowdsource clinical trial

    If you ask her parents, Trisha Sawhney is like any typical 12-year-old girl in so many ways...

  • Published On: 12 April 2021

    RVA Partner Education Webinar: Sustainable Funding and Fundraising for the Rare Disease Sector

    Sustainable, secure funding remains one of the key challenges for rare disease organisations. RVA is hosting an education...