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RVA News

  • Published On: 22 May 2017

    New Answers for Kids with Inherited Kidney Disease

    A new gene behind a rare form of inherited childhood kidney disease has been identified by a global research team...

  • 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: 2 March 2017

    Family of Young Cowboy with Rare Condition Call for Funding of Lifesaving Treatment

    Brave little Beau Cosgrove’s face lights up when he reaches for his beloved cowboy hat...

  • Published On: 25 February 2017

    Childhood Stroke Victim Fears Medication Subsidy Cuts Leave Her at Risk

    Sofia Belmonte was just eight years old when she had a stroke in 1978...

  • 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!...

  • Published On: 13 June 2016

    RVA Appoints Executive Officer

    The board of Rare Voices Australia is pleased to announce that Nicole Millis has been appointed to the role of Executive Officer for RVA, and has taken up her appointment this week...

  • Published On: 6 March 2016

    The Forgotten Ones Photographic Exhibition Opening Night

    The Forgotten Ones photographic exhibition was launched on Tuesday 1st March at Melbourne’s Forty Five Downstairs Gallery, by Sara James...