Most people with Rett are unable to speak, walk or use their hands. Breathing problems, feeding tubes, seizures, anxiety, gastrointestinal and orthopedic issues are common.
Research has shown that girls with Rett 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.
Whilst there is currently no treatment for Rett Syndrome, there is hope.
In 1999 scientists identified the genetic mutation that causes Rett Syndrome. In 2007, they unexpectedly reversed the condition in mouse models of even late stage disease.
Our research efforts are now focused on translating these research developments into treatments and cures for our children living with Rett Syndrome today.
You can help.
If you are the parent of a person with Rett Syndrome, please register your child below.
The Reverse Rett Registry is an independent patient registry. The information within it is completely confidential. We will never share your information with anyone without contacting you first.
Under the Data Protection Act 1998, Reverse Rett is committed to safeguarding the privacy of our service users. The charity is registered with the Information Commissioners Office and and adheres to the principles laid down under the Data Protection Act in processing personal data. The data you provide us with will be held securely to enable us to contact you in accordance with our aims and objectives. We will not release personal information we hold on you without your express written permission and we will not sell lists to a mailing company. Anonymised data might be used for the purposes of improving or facilitating improved clinical or medical provision for people with Rett Syndrome in the UK and beyond. If you have any requests regarding your personal information please contact us by post, phone or email.