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RVA News

  • Published On: 16 November 2018

    ‘Orphan’ Rare Diseases Focus of New Federal Government Support Plan

    The federal government will establish Australia’s first National Rare Diseases Framework and Action Plan to support people with rare conditions...

  • Published On: 15 November 2018

    Morrison Government announces support of National Rare Disease Framework

    Rare Voices Australia (RVA), the national peak not-for-profit organisation advocating for the nearly 2 million Australians living with rare disease...

  • 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: 29 January 2018

    Life Saving Drugs Program Reform

    RVA is pleased to welcome the Turnbull Government’s announcement that ended the long-standing uncertainty regarding the Review of the Life Saving Drugs Program (LSDP)...

  • Published On: 23 January 2018

    Medical Research Future Fund (MRFF) Update

    RVA was in Sydney recently for the announcement of the successful recipients of the recent Medical Research Future Fund (MRFF) round targeting rare cancers...

  • Published On: 13 June 2017

    This Little Boy Can Finally be a ‘Typical Boy’ Thanks to This Drug

    Little Beau Cosgrove was born with the Morquio A illness which affects every part of his body except his brain. There are only 21 known cases...

  • 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...