The first ever UK clinical trial of a potential treatment for Rett Syndrome was launched in March 2017 at King's College Hospital in London.
More treatments for different symptoms of the condition are on the horizon and so is a potential cure.
These developments are only happening because of the continued efforts of the families and friends of girls and women with Rett Syndrome in the UK who are doing what they can to raise critical research funds.
If you are reading this, no doubt you are looking for something that you can do to impact this effort. We need all the help we can get and we welcome your involvement.
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If you are the parent or caregiver of a person with Rett Syndrome, please also add them to the Reverse Rett Patient Registry here. This registry is the only currently active and up to date registry of patients with Rett Syndrome in the UK and is currently being used to recruit patients for UK clinical trials. The information on the Registry is completely confidential. If you care about someone with Rett, please register them so that we can contact you re relevant clinical trials and so that we can continue to demonstrate the need for UK patients to access emerging treatments and/or improved clinical provision in the UK.