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RVA News

  • Published On: 1 March 2021

    RVA’s Rare Disease Day Media Summary

    A big thank you to everyone who played a role in helping to generate awareness for 2021 Rare Disease Day. Below, we have included a summary of media...

  • Published On: 8 February 2021

    2021 Rare Disease Day Media Pack

    Rare Disease Day will be marked on Sunday 28 February. The main objective of Rare Disease Day is to raise awareness among the general public and decision-makers about...

  • Published On: 25 January 2021

    “Together we are Stronger”: Transforming Uncertainty Into Hope

    Learn how one family’s 14-year diagnostic odyssey led to the birth of SCN2A Australia...

  • Published On: 15 January 2021

    RVA is Hiring: Research & Evaluation Officer

    The Research and Evaluation Officer will play a key role in facilitating the collaborative implementation of the National Strategic Action Plan for Rare Diseases...

  • Published On: 8 January 2021

    RVA Education Webinar: NDIS Parliamentary Inquiry and Consultation Processes

    Rare Voices Australia (RVA) welcomes the opportunity to provide input from a rare disease perspective into changes...

  • Published On: 21 December 2020

    RVA Education: National Disability Insurance Agency Public Consultations Guide

    he National Disability Insurance Agency (NDIA) would like to hear from you regarding the changes they are making to the NDIS...

  • Published On: 27 November 2020

    RVA Poster Presentation for HGSA Virtual Conference 2020

    Rare Voices Australia (RVA) attended the Human Genetics Society of Australasia’s (HGSA) Virtual Conference on 24 and 25 November 2020. RVA was pleased to present...

  • Published On: 8 October 2020

    Hope on the Horizon

    Imagine your child is showing symptoms that confound doctors. You see expert after expert, getting test after test...

  • Published On: 7 October 2020

    Amplifying the Patient Voice in Rare Disease Access

    Rare disease patients are organising like never before, turning up the publicity volume and becoming ever more active in driving cures in the lab and even the boardroom...

  • Published On: 7 October 2020

    Federal Budget 2020-21 and Rare Disease

    On Tuesday evening, Treasurer Josh Frydenberg, announced the Morrison Government’s 2020-21 Federal Budget. As the peak body for Australians living with a rare disease...

  • Published On: 11 September 2020

    RVA Position Statement: Government Response to the Tune Review of the NDIS Act 2013

    On 28 August 2020, the Federal Government announced its response to the review of the National Disability Insurance Scheme (NDIS) Act 2013...

  • Published On: 26 August 2020

    Parliamentary Inquiry Support Materials

    As you may be aware, the House of Representatives Standing Committee on Health, Aged Care and Sport (the Committee), Chaired by Trent Zimmermann MP and Dr Mike Freelander MP...