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Family satisfaction with spinal fusion

Twenty-five families of girls who underwent a spinal fusion between 2006-2012 were interviewed to explore the course of their daughter's recovery.

Predictors of seizure onset in Rett syndrome

Many girls and women with Rett syndrome experience seizures. We wanted to know if there were any factors that influenced the age when seizures first developed.

Friendly Schools

Friendly Schools is the first Social and Emotional Wellbeing and Anti-bullying Initiative for schools developed through extensive research with Australian children and adolescents.

Guidelines, reports and books

We have recently developed recommendations to support clinical practice for gastro-intestinal disorders including growth and scoliosis in Rett syndrome.

Consumer reference group

The ARSS has a Consumer Reference Group to ensure family representation and input into issues relating to the design, management and output of the study.

News and events

Discover the news and events of the Rett syndrome and related disorders team, and find out what the team is working on in the fields of children disorders.

News & Events

HBF Run for a Reason 2014

On Sunday May 25th, the 'I love someone with Rett syndrome' team participated in the annual HBF Run for a Reason.

News & Events

"You can't stop loving them" - a grandmother's story about her granddaughter who has Rett syndrome

You can't stop loving them: the gift of a grandchild can sometimes be painful, writes Wendy Macklin.

News & Events

The Rett Syndrome Journey: Pathways to Follow

Our InterRett team visited Geelong, Australia to attend the first ever Rett Syndrome Association of Australia national conference.

Research

Defining the microbes in the middle ear and upper respiratory tract that lead to recurrent ear infections – a metagenomic study

Using the latest sequencing technology to examine the microbial composition of the middle ear & nasopharyngeal region, the site of initial colonization of OM