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RVA News

  • 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...

  • 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: 24 March 2021

    COVID-19 Vaccination Rollout Information for Carers: What You Need to Know

    Rare Voices Australia (RVA) attended the COVID-19 response update for carers webinar on 23 March 2021. The webinar was hosted by Professor...

  • Published On: 10 March 2021

    Survey: Inform WA Health Department About Support Required by Rare Disease Community Groups

    In Western Australia, hundreds of peer support groups and other Non Governmental Organisations (NGOs)...

  • 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: 12 February 2021

    Victoria Goes into Five Day Lockdown

    Victoria has entered into a five day lockdown due to a COVID-19 cluster that continues to grow from hotel quarantine...

  • 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: 1 February 2021

    Western Australia Enters Five Day Lockdown

    Effective from 6pm Sunday, 31 January 2021 until 6pm Friday, 5 February 2021, the Perth metropolitan area and the Peel and South West regions will enter a 5-day lockdown, based on health advice...

  • Published On: 28 January 2021

    Dr Jim McGill receives 2021 Australia Day Honours

    Rare Voices Australia (RVA) congratulates Dr Jim McGill on his 2021 Australia Day Honour for significant service to metabolic medicine, to biochemical genetic pathology...

  • 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...