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News & Events

Global war on brain cancer

Dr Nick Gottardo and Dr Raelene Endersby from The Kids Research Institute Australia are the driving force behind an innovative, global action group on child brain cancer.

News & Events

Making FASD history in the Fitzroy Valley

The Make FASD History campaign, led by community researchers and The Kids Research Institute Australia, has made huge inroads into prevention, diagnosis and therapy.

News & Events

On a quest for kids with cystic fibrosis

PRAGMA-CF, a new way of measuring early lung disease in young kids with cystic fibrosis is changing the way we detect and treat CF.

Assessment and management of nutrition and growth in Rett syndrome

We developed recommendations to assess and manage issues relating to poor growth and weight gain in Rett syndrome, including consideration of gastrostomy.

Experience of gastrostomy using a quality care framework: The example of Rett syndrome

We investigated our data from family questionnaires to see how feeding difficulties related to age, the type of MECP2 mutation, and the use of gastrostomy.

Level of purposeful hand function as a marker of clinical severity in Rett syndrome

We developed a measure of hand function, and then investigated relationships between hand function, type of MECP2 mutation, age and severity of symptoms.

Parental experiences of scoliosis management

We investigated what parents thought about the ways to manage scoliosis and what they thought they needed to help them better manage their daughter's scoliosis.

Caring for caregivers

When you build routines into your day to increase uptime, it doesn’t only affect the person with Rett syndrome; it affects the whole family.

Participate in Research

AussieRett is the Australian Rett syndrome research study. We collect information on Australian individuals with Rett syndrome from both families and clinicians

News & Events

Visit to Shenzhen, China

Helen and Jenny visited Shenzhen in the south of China twice during 2013 to talk with clinicians and families at the Shenzhen Children's Hospital.