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        Research

        Autonomic breathing abnormalities in Rett syndrome: caregiver perspectives in an international database study

        Our aims were to characterize the abnormal breathing patterns and abdominal bloating, investigate the distribution of these by age and mutation type and examine their impact and management from a caregiver perspective. ...

        Research

        Day occupation is associated with psychopathology for adolescents and young adults with Down syndrome

        In comparison to those young adults attending open employment from 2009 to 2011, those attending day recreation programs were reported to experience... ...

        Research

        Caring for a child with severe intellectual disability in China: The example of Rett syndrome

        Intellectual disability affects more than 1.5% of the population of children in developing countries yet we know little about the daily lives and support... ...

        Research

        Functioning and post-school transition outcomes for young people with Down syndrome

        Our analysis shows that functioning in activities of daily living was related to post-school day occupation. Current health status and behaviour were found... ...

        Research

        Early development and regression in Rett syndrome

        Our findings provide additional insight into the early clinical profile of Rett syndrome. ...

        Research

        To Feel Belonged: The Voices of Children and Youth with Disabilities on the Meaning of Wellbeing

        The aim of this paper was to describe the meaning of wellbeing for children and youth with disabilities from their perspective. ...

        Research

        Updating the profile of C-terminal MECP2 deletions in Rett syndrome

        This study aimed to compare the phenotype of Rett syndrome cases with C-terminal deletions to that of cases with different MECP2 mutations ...

        News & Events

        Building the foundations of communication

        In this blog, Senior Speech Pathologist Sally Grauaug looks at how to build the foundations of communication with your child. ...

        Research

        Experience of gastrostomy using a quality care framework: The example of rett syndrome

        Gastrostomy assisted the management of feeding difficulties and poor weight gain, and was acceptable to families ...

        Research

        The trajectories of sleep disturbances in Rett syndrome

        This paper demonstrated that the evolution of sleep problems differed between subgroups of girls and women with Rett syndrome, in part explained by age and... ...

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