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Protecting your privacy is important to us. This policy explains how The Kids Research Institute Australia collects, uses, and safeguards your personal information.

About

Rett syndrome is a rare but serious neurological disorder that affects about 1 in 9,000 girls. Even more rarely, boys may be affected.

Behavior and mutation type

We also wanted to find out whether any particular behaviours were associated with any specific mutation types.

A validation study of a modified Bouchard activity record

We compared parent/carer-reported physical activities with the number of steps counted by an accelerometer in girls and women with Rett syndrome.

Physical and mental health of mothers caring for a child with Rett syndrome

We wanted to find out whether mothers with a child with Rett syndrome who were more physically and mentally healthy had particular characteristics.

Family satisfaction following spinal fusion in Rett syndrome: a cohort study

This study evaluated sixty-one families' satisfaction following spinal fusion in girls with Rett syndrome.

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 much activity is recommended?

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

Participate in InterRett / MECP2 Duplication Research

Through InterRett we collect information on individuals with Rett syndrome on a global level. If you are a participant you can complete your questionnaire here.

News & Events

High Tea for Rett Syndome at Caversham House

Thanks for everyone who have contributed to and participated in this wonderful event to raise much needed funds to support Rett Syndrome research!