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Reverse Rett & Rett UK Charity Support

What Is Rett Syndrome?

Estimated to affect 1 in 10,000 people, Rett Syndrome is most often seen in girls and women because the gene which causes Rett Syndrome is on the X chromosome. Girls and women have two X chromosomes whereas boys have one. The consequence of not having that ‘back up’ copy of the gene is devastating. Most boys with Rett Syndrome do not survive beyond the age of one or two years old.


Most children and adults with Rett Syndrome are unable to speak, walk or use their hands. Breathing problems, feeding tubes, seizures, anxiety, gastrointestinal and orthopaedic issues are common.

Research has shown that people with Rett Syndrome do not have brain damage. They know and understand much more than their bodies allow them to show – but they are locked in, trapped by a body that cannot obey signals from their brain.

Donate To ReverseRett

Reverse Rett are a charity fund critical research and clinical trails who's main aim is to not just 'manage' the condition but also aim to reverse the condition completely. to donate please click here or click the Donate button below.


Rett UK

Rett UK is the ONLY UK charity that provides professional support to people living with Rett syndrome across the UK.

to donate please click here or click the Donate button below.

Contact Us Today

Working Hours

Mon - Fri: 9am - 6pm
Sat: Closed
Sun: Closed

Contact: Hours
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