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RVA News

  • Published On: 9 June 2021

    Newborn Bloodspot Screening Update: Changes to the Assessment Process for Nominated Conditions

    The Department of Health has announced changes to the assessment process for nominated conditions conducted...

  • 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: 31 May 2021

    Andrew Bannister wins the Masonic Care WA/Freemasons WA Community Service and Volunteering Award and the People’s Choice Award

    Rare Voices Australia (RVA) congratulates rare disease advocate, Andrew Bannister, who has been announced...

  • Published On: 27 May 2021

    Australian Clinical Trials Alliance: Have your say on secondary use of data in clinical research

    Interested in secondary use of data for Australian research? Invitation to take part in Australian Clinical...

  • Published On: 27 May 2021

    Victoria Enters Seven Day Lockdown

    From midnight 27 May 2021, Victoria will enter a seven day lockdown...

  • Published On: 14 May 2021

    United Nations General Assembly Resolution on Persons Living with a Rare Disease and their Families

    The global community of persons living with a rare disease, their families, and civil society organisations, with the support...

  • Published On: 13 May 2021

    MRFF Rare Cancers Rare Diseases Unmet Need grant open

    A new Medical Research Future Fund (MRFF) Rare Cancers Rare Diseases Unmet Need grant has opened...

  • Published On: 12 May 2021

    Federal Budget 2021-22 and Australians living with a rare disease

    On Tuesday 11 May 2021, Treasurer Josh Frydenberg announced the Morrison Government’s 2021-22 Federal Budget...

  • 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: 20 April 2021

    Article Published in Journal of Paediatrics and Child Health

    Rare Voices Australia (RVA) Scientific and Medical Advisory Committee members, Kaustuv Bhattacharya, Yvonne Zurynski and Adam Jaffe...

  • Published On: 16 April 2021

    Compulsory NDIS Assessments Placed on Pause

    Senator the Hon. Linda Reynolds CSC, Minister for the National Disability Insurance Scheme (NDIS), has placed compulsory NDIS assessments on pause...