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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.

Seizures in Rett syndrome: an overview from a one-year calendar study

We collected information on a monthly basis on the patterns of seizures and medications of 162 girls in the Australian Rett Syndrome study over a calendar year.

Publications

Publications from 2016 dating back to 1993 of AussieRett researchers, showing the research work into Rett syndrome and related disorders.

Our People

Learn more about our people - the dedicated researchers and staff working to address Rett syndrome, CDKL5 and other related disorders.

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.

About Rett syndrome

Rett syndrome is one of the 8,000 rare genetic diseases that collectively affect up to 10% of the population.

Why get active?

Anyone who engages in physical activity, regardless of how much they do, can achieve mental, physical and social health benefits, resulting in benefits to their quality of life.

Routines to maximise uptime

Learn about the importance of routines in enhancing uptime for children with Rett Syndrome, nurturing their engagement and fostering meaningful activities.