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Research

The Sibling Project focuses on the wellbeing, relationships and needs of children, adolescents and emerging adults who have a sibling with a developmental disability.

Developmental and epileptic encephalopathy (DEE) conditions are rare, and most have a genetic cause.

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The first comprehensive analysis of the clinical effects of genetic mutations involved in Rett syndrome

Research

For most individuals, there is initial developmental progress followed by regression at around 6–30 months. The classic signs of RTT then become apparent.

Research

Early presentation of Rett syndrome, including regression and challenges for families seeking a diagnosis

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

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

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