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RVA News

  • Published On: 8 October 2020

    Hope on the Horizon

    Imagine your child is showing symptoms that confound doctors. You see expert after expert, getting test after test...

  • Published On: 7 October 2020

    Amplifying the Patient Voice in Rare Disease Access

    Rare disease patients are organising like never before, turning up the publicity volume and becoming ever more active in driving cures in the lab and even the boardroom...

  • Published On: 7 October 2020

    Federal Budget 2020-21 and Rare Disease

    On Tuesday evening, Treasurer Josh Frydenberg, announced the Morrison Government’s 2020-21 Federal Budget. As the peak body for Australians living with a rare disease...

  • Published On: 11 September 2020

    RVA Position Statement: Government Response to the Tune Review of the NDIS Act 2013

    On 28 August 2020, the Federal Government announced its response to the review of the National Disability Insurance Scheme (NDIS) Act 2013...

  • Published On: 26 August 2020

    Parliamentary Inquiry Support Materials

    As you may be aware, the House of Representatives Standing Committee on Health, Aged Care and Sport (the Committee), Chaired by Trent Zimmermann MP and Dr Mike Freelander MP...

  • Published On: 17 July 2020

    SourceKids: COVID-19 Edition

    Rare Voices Australia’s CEO, Nicole Millis, was interviewed for SourceKids’ special COVID-19 edition...

  • Published On: 26 February 2020

    New Plan for Grappling with Rare Diseases

    When Kane Blackman’s son started experiencing severe symptoms of an unknown condition, he was told his child was delayed and would eventually catch up...

  • Published On: 23 February 2020

    Rare Disease Day 2020: Far North Queensland Fun Run

    Rare Voices Australia (RVA) attended the Far North Queensland Fun Run in the lead-up to Rare Disease Day 2020 and were interviewed by Channel 7...

  • Published On: 3 April 2019

    Federal Budget 2019-20 and Rare Disease

    On Tuesday evening, Treasurer Josh Frydenberg announced the Morrison Government’s 2019-20 Federal Budget. As a peak body, Rare Voices...

  • Published On: 25 February 2018

    RVA Board of Directors Positions

    RVA currently has vacancies for volunteer directors on our Board. Board meetings are held via teleconference every 2 months and involve 1 to 2 hours of pre-reading...

  • Published On: 11 May 2017

    Healthcare Experiences of Adults Living with a Rare Disease in Australia Survey Results

    In 2014, an online survey was conducted to explore the healthcare experiences of Australian adults living with a rare disease. The survey was developed...

  • Published On: 12 February 2017

    Alan Bittles Receives OAM

    RVA would like to congratulate Alan Bittles for receiving an Order of Australia Medal for ‘For significant service to medical education in the field of genomics...