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RVA News

  • 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...

  • Published On: 26 October 2016

    International Joint Recommendations for Undiagnosed Rare Disease Patients Dissemination Paper

    On behalf of patients living with undiagnosed and rare diseases across Europe, North America, Australia and Japan...

  • Published On: 19 September 2016

    Inaugural Australian Rare Disease Research Network Meeting

    The focus of the workshop was to visit nine short papers that talked to a range of issues concerning rare disease registries as well as...

  • Published On: 28 August 2016

    HGSA Conference and RVA Rare Disease Registry Workshop

    Rare Voices Australia (RVA) attended the Human Genetics Society of Australasia’s (HGSA) 40th Annual Scientific Meeting in Hobart...

  • Published On: 24 August 2016

    Fair for Rare Campaign

    Rare Voices Australia is advocating for people living with a rare disease to have equal access to safe, effective treatments and healthcare management in a coordinated and adequately resourced...

  • Published On: 19 June 2016

    European Conference on Rare Disease & Orphan Products (ECRD)

    Titled ‘Game Changers in Rare Diseases Delivering 21st Century healthcare to rare disease patients: Together we can change the future!...