Patients with difficult-to-treat bacterial infections across NSW will soon have better access to limb and life-saving therapy known as phage therapy, thanks to a $3.5 million funding boost announced by the NSW Government.

A world-first clinical trial has been launched at Sydney Children’s Hospital, Randwick for children with ependymoma – a rare and devastating form of paediatric brain cancer.

Steps are being taken by SCHN to improve equity of access and service management for those living with a rare disease via The Navigator Project.

Over $2 million in funding has been awarded by Luminesce Alliance to support the Providing Enhanced Access to Child Health Services Evaluation (PEACH-E) project.

A SCHN study investigated the outcomes of using parental and staff feedback to develop and evaluate the service of the ‘Difficult to Vaccinate’ clinical pathway.

More than $18.7 million in funding has been allocated to researchers across SCHN through the latest MRFF grant.

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.

Dr Bhavna Padhye and Dr Rebecca Poulos have been awarded a joint fellowship to support a translational project for paediatric cancer.

They say knowledge is power, and a team of clinicians from our Network have set out to change the narrative around the treatment of FND and FS through the power of knowledge sharing.

A new RNA data tool aims to help patients with genetic diseases to receive a quicker diagnosis and improve their access to therapies.