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  • Published On: 9 February 2023

    2023 Rare Disease Day Media Pack

    Rare Disease Day occurs on the last day of February annually. In 2023, Rare Disease Day will be marked on Tuesday 28 February. Rare Voices Australia (RVA) will be organising...

  • Published On: 31 January 2023

    2023 Sawatzky Cup Raises Over $11,000 for Rare Voices Australia and Australians Living With a Rare Disease

    On behalf of Rare Voices Australia (RVA) and the estimated two million Australians living with a rare disease, thank you to everyone...

  • Published On: 31 January 2023

    RVA Partner Opportunity: Youth Mental Health First Aid Training

    Rare Voices Australia (RVA) is pleased to continue our work in 2023 with Mental Health First Aid (MHFA) Australia...

  • Published On: 31 January 2023

    RVA Partner Opportunity: Aboriginal and Torres Strait Islander Mental Health First Aid Training

    Rare Voices Australia (RVA) is pleased to continue our work in 2023 with Mental Health First Aid (MHFA) Australia...

  • Published On: 30 January 2023

    Rare Voices Australia Congratulates Childhood Dementia Initiative on the Recent Launch of the Childhood Dementia Knowledgebase!

    Rare Voices Australia (RVA) Partner, Childhood Dementia Initiative (CDI), recently launched the Childhood Dementia...

  • Published On: 30 January 2023

    Congratulations to Rare Voices Australia Scientific and Medical Advisory Committee Member Associate Professor Paul Lacaze!

    Associate Professor Paul Lacaze, Head of Public Health and Genomics at Monash University...

  • Published On: 18 January 2023

    Expressions of Interest: Consumer Representatives With Lived Experience of a Genetic Condition and/or the Genetic Services of Western Australia

    Western Australia’s (WA) Department of Health recently released the WA Genomics Strategy...

  • Published On: 20 December 2022

    Refreshed National Medicines Policy (NMP) Delivered to the Australian Government

    The Hon Mark Butler MP, Minister for Health and Aged Care, has announced the updated National Medicines Policy (NMP)...

  • Published On: 9 December 2022

    Reflections From the 2022 Annual Scientific Meeting for the Human Genetics Society of Australasia (HGSA)

    Held from 24-27 November 2022, the 45th Annual Scientific Meeting for the Human Genetics Society of Australasia...

  • Published On: 1 December 2022

    Recap: 2022 National Rare Disease Summit

    Thank you to everyone who joined us in-person and virtually at Rare Voices Australia’s (RVA) 2022 National Rare Disease Summit (the Summit)...

  • Published On: 30 November 2022

    RVA Education: Expansion of Newborn Bloodspot Screening Public Consultation

    On 11 November 2022, at Rare Voices Australia’s (RVA) National Rare Disease Summit, the Hon Mark Butler MP, Minister for Health and Aged Care, announced...

  • Published On: 23 November 2022

    First Ever Global Consensus Clinical Care Guidelines for Sanfilippo Syndrome

    The first-ever global consensus clinical care guidelines (guidelines) for Sanfilippo Syndrome have been published. RVA Partner Sanfilippo Children’s Foundation...