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RVA News

  • 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: 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: 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: 7 September 2015

    Rare Disease Articles – Australian Family Physician

    Rare Voices Australia is thrilled to see the Australian Family Physician (published by The Royal Australian College of General Practitioners) focus on Rare Diseases, unexplained illness...

  • Published On: 1 September 2015

    A Powerful Team: The Family Physician Advocating for Patients with a Rare Disease

    Rare diseases are characteristically difficult to diagnose and for the majority, there are no effective treatments or evidence-based management guidelines.

  • Published On: 11 May 2015

    The Forgotten Ones Photographic Exhibition

    A photographic exhibition opening in Sydney next week offers a unique perspective on what it’s like to grow up with someone living with a rare disease...

  • Published On: 1 June 2014

    Source Kids Magazine launches its First Edition

    Have you heard? Source Kids has just launched their First Edition of their glossy magazine – in both hardcover and online. It’s a wonderful resource that provides...