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RETT SYNDROME ASSOCIATION UK

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Lady with Rett syndromeYoung girl with Rett syndrome

Rett syndrome is a complex neurological disorder. It affects mainly girls. Although present at birth, it becomes more evident during the second year.  It could occur in any family at any time.  Something goes wrong with the genetic makeup of the cells which become the baby.  One in 10,000 girls is affected.

Whilst there is variability in the severity of the disorder, most people with Rett syndrome are profoundly and multiply disabled and highly dependent on others for all their needs throughout life.  Increasingly, people with Rett syndrome live well into their 50s and beyond.

We are a national charity

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We offer information, advice, practical help, friendship and support to people with Rett syndrome, their families and carers.

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We work to increase clinical and public awareness of the condition.

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We fund and prompt research towards an eventual cure.

We rely almost entirely on donations and grants for our income.  We are grateful for every penny we receive.

Registered charity no: 327309

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