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RVA News

  • 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...

  • Published On: 1 March 2021

    RVA’s Rare Disease Day Media Summary

    A big thank you to everyone who played a role in helping to generate awareness for 2021 Rare Disease Day. Below, we have included a summary of media...

  • Published On: 8 February 2021

    2021 Rare Disease Day Media Pack

    Rare Disease Day will be marked on Sunday 28 February. The main objective of Rare Disease Day is to raise awareness among the general public and decision-makers about...