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We investigated the factors that may affect the age at diagnosis for girls and woman with Rett syndrome.

With the help of clinicians and families who have children with Rett syndrome, our research aims to improve understanding of Rett syndrome.

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.

We have recently developed recommendations to support clinical practice for gastro-intestinal disorders including growth and scoliosis in Rett syndrome.

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Helen and Jenny visited Shenzhen in the south of China twice during 2013 to talk with clinicians and families at the Shenzhen Children's Hospital.

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Research Officer

We wanted to examine the effects of spinal fusion surgery to treat scoliosis on the functional abilities of girls and women with Rett syndrome.

We used multiplex ligation-dependent probe amplification to examine the MECP2 gene sequences in 149 girls and 1 boy.

Funded by the International Rett Syndrome Foundation, this international online database examines the clinical features and genetic characteristics.

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