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RVA News

  • 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...

  • Published On: 1 March 2016

    Melissa Parke MP Speaks out for Rare Diseases

    Melissa Parke MP delivered a speech in Parliament on International Rare Disease Day (29th February 2016) on the need for priority focus for a Rare Diseases Policy. Read the speech...

  • Published On: 2 February 2016

    Australia Day Honours – Congratulations Megan Fookes of RVA

    Megan Fookes, co-founder of Rare Voices Australia was overwhelmed when she heard the news of receiving the Medal of the Order (OAM) on Australia Day. Megan has dedicated...

  • Published On: 2 December 2015

    European Conference on Rare Diseases, 26 – 28 May 2016

    In its eighth year, the ECRD brings together over 80 speakers and more than 800 participants, covering six themes over two days, including the latest research...

  • Published On: 24 November 2015

    Policy News – December 2015

    RVA is advocating and presenting the rare disease health consumer perspective in a range of areas currently being reviewed by the Federal Government primarily in the health sector...

  • Published On: 4 November 2015

    Rare Disease Day 2016 – ‘Patient Voice’

    On 29 February 2016, people living with or affected by a rare disease, patient organisations, politicians, carers, medical professionals, researchers and industry will come together...

  • Published On: 4 November 2015

    Partners in Patient Health Asia Pacific Forum 2015

    The theme for the Partners in Patient Health Asia Pacific Forum 2015 was ‘Working Together With One Voice’. This is is the second event, which aimed to convene leading patient...