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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.

News & Events

3rd European Rett Syndrome Conference, October 17-19, Maastricht, The Netherlands

Following last year's World Rett Syndrome Congress held in New Orleans, the 3rd European Rett Syndrome Conference was held in the Netherlands over 3 days.

News & Events

MECP2 duplication syndrome in the news

Our own Dr Helen Leonard was recently featured on Today Tonight. MECP2 duplication syndrome, which more frequently affects boys, is one of the Rett syndrome...

Western Australian Child Development Atlas

The Western Australian Child Development Atlas will use geospatial technology to map data on Western Australian children’s health, learning, development and social characteristics, giving community leaders and service providers the ability to identify the priority issues for their children.

Australian Declaration for Young Children

More than 100 leading Australian stakeholders with early childhood expertise were invited to work with CoLab to develop the first Australian EC Declaration.

Research

Improving Wellbeing for Young People Living with Rheumatic Heart Disease: A peer support program through Danila Dilba Health Service

This project seeks to conduct a focus group for young people (aged 11-14) and their parents/family members through the Danila Dilba Health Service (DDHS) in Darwin with the aim of identifying consumer needs and perspectives on next steps and priorities for peer support in RHD.

Research

Innovative Playful Learning Approaches to Improve Children’s Readiness for Primary Education in Uzbekistan

The Government of Uzbekistan has committed to reforming preschool education, prioritising upskilling teachers to use international best practice.

Research

International CDKL5 Disorder Database

Helen Jenny Leonard Downs MBChB MPH BApplSci (physio) MSc PhD Principal Research Fellow Head, Child Disability +61 419 956 946 08 6319 1763