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Rett syndrome is a rare neurological disorder affecting mainly females and very few males.

It is present from conception and usually remains undetected until major regression occurs at around one year of age, when children may lose acquired skills and become withdrawn. Genetic but largely not inherited, Rett syndrome is usually caused by a fault on a gene called MECP2 which is found on the X chromosome.

People with Rett syndrome have profound and multiple physical and communication disabilities and are totally reliant on others for support throughout their lives.

Rett UK provide free support, advice and resources to anyone affected by Rett syndrome. Amongst their services their Family Support Team offer: help with diagnosis, support groups, advocacy, getting started with communication support and training, regional roadshows, accessing a specialist Rett syndrome clinic, as well as bereavement support.