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Resources

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.

Family resources

Rett Syndrome Association of Australia and ANZACRett are two family-oriented organisations.

Search our databases

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

ActiveRett

Staying physically active is an important part of a healthy lifestyle. ActiveRett is a dedicated resource for helping families support their child with Rett syndrome to keep active.

How to get active

Considering one’s own capacity, activity should be included into everyone’s daily routine to make sure these recommended levels of activity are being as closely met as possible, for everyone to secure the most benefits.

Planning opportunities for uptime

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

Toolkit of uptime strategies

Learn about a practical toolkit of strategies to maximize uptime for children with Rett Syndrome, promoting engagement and facilitating meaningful activities.

How much activity is recommended?

Each family needs to select the appropriate types and levels of activity that suit their own individual needs and circumstances.

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.

Research on activity in Rett syndrome

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