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        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

        Article Title Robertson L, Hall S, Jacoby P, Ellaway C, De Klerk N, Leonard H. The association between behaviour and genotype in Rett Syndrome using ...

        A validation study of a modified Bouchard activity record

        Article title Lor, L., Hill, K., Jacoby, P., Leonard, H., & Downs, J. (2015). A validation study of a modified Bouchard activity record that extends ...

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

        Article title Laurvick CL, Msall ME, Silburn S, Bower C, de Klerk N, Leonard H. Physical and mental health of mothers caring for a child with Rett ...

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

        Article title Downs, J., Torode, I., Ellaway, C., Jacoby, P., Bunting, C., Wong, K., Christodoulou, J., & Leonard, H. (2016). Family satisfaction ...

        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?

        Look for opportunities WHO Good practice statements Physical activity opportunities can be found in nearly all settings and nearly all times of day. ...

        Participate in InterRett / MECP2 Duplication Research

        Participate in InterRett / MECP2 Duplication Research How Can You Participate? Contact Us Families - How do we collect and analyse your data? The ...

        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! ...

        News & Events

        The Silent Angel

        Taylor is a remarkable young woman with Rett Syndrome who is leading an active country life with the support of her family and the local community. ...

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