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Altered attainment of developmental milestones

Regression, including the loss of previously learned skills, such as hand function and communication skills, is one of the most suggestive features of Rett synd

Validating the Rett Syndrome Gross Motor Scale

Our study investigated the quality of measurements obtained using the Rett Syndrome Gross Motor Scale.

Early determinants of fractures in Rett syndrome

We wanted to compare the frequency of fracture episodes, and factors associated with a fracture, in females with Rett syndrome, compared to general population.

Surgical fusion of early onset severe scoliosis increases survival in Rett syndrome: a cohort study

Our study investigated the impacts of spinal fusion on survival and the risk of developing respiratory infections in females with Rett syndrome.

Impact of scoliosis surgery on daily living

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

Family resources

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

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.

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.

News & Events

The InterRett database: Looking back and looking forward. What we have done and can do with your involvement!

Click the photo below to download Dr Helen Leonard's online webinar hosted by Rettsyndrome.org.

News & Events

Meeting with families in China

Prof Helen Leonard and Dr Jenny Downs recently visited Shenzhen, China to meet Chinese families and child neurologists from the Shenzhen Children's Hospital.