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  • Published On: 28 June 2021

    Rare Voices Australia Partners with the Western Australian Department of Health

    Rare Voices Australia (RVA) is pleased to partner with the Western Australian Department of Health (WADOH) on three projects to progress the implementation...

  • Published On: 1 June 2021

    ABC Nightlife Rare Diseases Segment

    Chair of Rare Voices Australia’s (RVA) Scientific and Medical Advisory Committee, Professor Adam Jaffé, and Heather Renton, Chief Executive Officer of RVA Partner...

  • Published On: 6 May 2021

    Young Australians living with rare diseases defy the odds but need better support, expert says

    Young Australians living with rare diseases can face significant social, employment and educational barriers in life...

  • Published On: 27 April 2021

    Parents of first Aussie child diagnosed with rare disease to crowdsource clinical trial

    If you ask her parents, Trisha Sawhney is like any typical 12-year-old girl in so many ways...

  • Published On: 12 April 2021

    RVA Partner Education Webinar: Sustainable Funding and Fundraising for the Rare Disease Sector

    Sustainable, secure funding remains one of the key challenges for rare disease organisations. RVA is hosting an education...

  • 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...