Imagine being told the toddler you thought was healthy, but perhaps slow to progress, in fact had a rare and devastating disability that would leave them needing lifelong 24/7 care. That is the reality for parents receiving a diagnosis of Rett syndrome for their child. Rett syndrome changes lives irrevocably and Rett UK is the only UK charity providing professional support to those families.

Rett syndrome is a severe, life long, life limiting genetic neurological disorder and the most common cause of profound learning disabilities affecting mainly females (1 in 12,000). Although present at birth, it is usually undetected until a major regression occurs at around two years of age, when children lose acquired skills and the complexity of the disability is revealed.

Rett UK provides the emotional and practical support needed to deal with the everyday challenges that Rett syndrome presents. A national telephone helpline answers calls from desperately worried parents, not just at the point of diagnosis but also at key transitions and moments of crisis. Local family led support groups and a parent-to-parent contact network provide the contact with other families that is so crucial in reducing isolation. Access to high quality seminars from the UK’s leading experts on Rett syndrome at Regional Days and Family Weekends provides families with up to date, accurate information in subjects like epilepsy, spinal surgery and communication, helping them with management of the disability

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