Categories

  • Published On: 29 July 2015

    Rare Disease Communique – Has Your Organisation Signed?

    The RVA Rare Disease Summit presented a Draft Communique which is the key principles and objectives of a National Rare Disease Plan. RVA is calling for support from all Rare...

  • Published On: 27 May 2015

    Research News – Victoria

    Great news for people living with undiagnosed rare diseases in Victoria. Premier Daniel Andrews MP has provided $25 million to develop a state-wide genomic sequencing program...

  • Published On: 8 May 2015

    RVA Board of Directors Strategy Day

    The Rare Voices Australia Board of Directors met for their annual Strategy Planning Day at the Board of Trustees meeting room in the Female Orphan School, University of Western Sydney...

  • Published On: 19 April 2015

    Post-Summit Media Release – Rare Disease Summit

    Rare Voices Australia hosted a Rare Disease Summit on Friday 27th and Saturday 28th March 2015 in Melbourne. A National Rare Disease Plan, Driving Collaboration...

  • Published On: 23 March 2015

    Pre-Summit Media Release – Rare Disease Summit

    A National Rare Disease Plan, Driving Collaboration, Driving Action, will be opened by Senator Richard Di Natale; one of many Parliamentary Friends of Rare Diseases...

  • Published On: 23 February 2015

    Rare Disease Day 2015

    Rare Voices Australia calls for a National Plan to reduce the suffering of an estimated 2 million Australians...

  • Published On: 15 February 2015

    National Plan Engagement Roadshows

    Rare Voices Australia is advocating as its number one priority for Australia to adopt a National Rare Diseases Plan. Over the past two years extensive...

  • Published On: 15 June 2014

    Graeme Innes Speaks on Access to Justice for People with Disabilities

    are Voices Australia attended the public RightsTalk discussion – “Balancing the Scales of Justice” presented by Graeme Innes, Commissioner for Disabilities...

  • Published On: 8 January 2014

    Rare Sweet Day for Rhiannen Sugars

    Rhiannen Sugars wants people to know that February 28 is Rare Disease Day, a relatively new way of raising awareness of the many complex and mysterious medical conditions...

  • Published On: 14 December 2013

    Un-Doctored

    RVA Board Director Dr Tracy Dudding recently attended the Royal College of Pathologists of Australasia’s Pathology Update. Professor John Christodoulou, a Director of the Western Sydney Genetics Program...

  • Published On: 30 November 2013

    Genetic Revolution Offers Hope

    The paradox about rare or ‘orphan’ diseases is that, collectively, they are not uncommon. There are thousands of identified rare diseases affecting about 350 million people worldwide. This includes...

  • Published On: 31 October 2013

    Woman Speaks Out for People with Rare Diseases

    New RVA supporter, Kath of Deer Park VIC, talks of her daily struggle living with a rare disease and the hope that RVA brings to her and her family. The Brimbank mother was struck down...