Our patients

  • Mums create storybooks straight from the heart

    Over 18 weeks, a group of mums and bubs wrote and illustrated their own books, supported by tools and guidance to help share their individual stories.
    Wednesday 5 April 2023

  • Empowering Lili to live her very best life

    Run your own race and find your cheerleaders along the way. That is the advice Melissa, mother of 18-year-old Lili, wants to share with the two million Australians impacted by rare diseases.

    Tuesday 28 February 2023

  • Weston defies all the odds

    At fourteen months old, Weston has already made history, becoming the first, and oldest known surviving child in Australia with ultra-rare genetic condition, Wolman’s Disease.
    Tuesday 28 February 2023

  • Leading the adoption of digital referrals

    Sydney Children’s Hospitals Network (SCHN) is leading the adoption of digital referrals in Australian hospitals, partnering with Consultmed, an Australian health technology company that streamlines digital referrals, consent, clinical triage, and remote expert opinion.
    Friday 24 February 2023

  • World-first data tool a 'game-changer' for rare diseases

    A new RNA datatool aims to help patients with genetic diseases to receive a quicker diagnosis and improve their access to therapies.
    Friday 17 February 2023

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