Categories

News

RVA News

  • Published On: 17 October 2019

    Outrage Over Brothers’ NDIS Payments

    Click here to read media generated following the research of the Disability & Rare Disease: Towards Person Centred Care for Australians with Rare Diseases report...

  • Published On: 29 June 2019

    Are Rare Diseases Being Overlooked by the NDIS?

    Rare Voices Australia’s (RVA) CEO, Nicole Millis, was interviewed by Claire Lindsay on ABC’s AM radio show. Click here to listen to the interview...

  • Published On: 3 April 2019

    Federal Budget 2019-20 and Rare Disease

    On Tuesday evening, Treasurer Josh Frydenberg announced the Morrison Government’s 2019-20 Federal Budget. As a peak body, Rare Voices...

  • Published On: 9 February 2019

    Rare Voices Australia: Working to Make it Fair for Rare

    The burden of rare disease remains unacceptably high according to one national organisation fighting for the rights of nearly 2 million Australians...

  • 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...