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We investigated the occurrence of altered pain sensitivity as well as how these altered reactions to pain were observed during daily life.

We compared information on the life expectancy of Dr Rett's original group in 1966 with information in the Australian Rett Syndrome Database.

We investigated the occurrence of different types of hand stereotypies and whether they were more frequent in one hand or the other.

In order to help doctors and families reduce the risk of fractures, we developed clinical guidelines for managing bone health in Rett syndrome.

These resources include the best available evidence about the course of Rett syndrome and its management as well as practical information about family associations, specialist clinical centres and links to relevant websites.

Our Searchable online database allows you to create graphs like the one below.

Embrace the potential of children with Rett Syndrome by exploring how to plan opportunities for uptime, maximizing their engagement and participation in meaningful activities.

Our research team have done 4 studies to find out how to increase activity in children and adults with Rett syndrome.

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

Meet our survey team and our survey reference group