Reverse Rett

Reverse Rett is a patient advocacy and research organisation focused on delivering treatments and a cure for Rett Syndrome to everyone affected.

Rett Syndrome is a post-natal neurological disorder, which most often affects little girls, around the age of 12-18 months.

Estimated to affect 1:10,000 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.

The good news is that in 2007, with the successful reversal of Rett Syndrome in the lab, we entered a new era for research in which we knew a cure was possible. Over the last decade, we’ve invested in high quality research projects. We also fund the world's first centre for personalised medicine (CIPP Rett Centre) in Rett Syndrome which has resulted in rapid progress in our understanding of Rett and how families can improve the day to day lives of people living with it.

In 2021, clinical trials using gene therapy are firmly on the horizon and at Reverse Rett, we’re focused on doing what we need to do to build UK medical capacity to deliver complex emerging treatments for Rett Syndrome as soon as humanly possible.

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