Rett Registry UK

Reverse Rett holds the only current and accurate registry of patients with Rett Syndrome in the UK.

The registry is a critical component of our work to deliver treatment for Rett Syndrome in the UK. It enables us to contact the families of registered patients directly as and when the need arises re upcoming clinical trials or for help in demonstrating unmet need in terms of medical and clinical provision in the UK.

If you love or care for someone with Rett Syndrome, please register them today. It only takes minutes to register. The information submitted is completely confidential. Please note that if you live in the EU and are interested in UK based or other European clinical trials, you can also register.

Rett Registry

    Patient Information


    Your Details


    Contact Details



    MECP2 test?

    YesNoNot sure

    Positive or negative?

    PositiveNegativeNot sure

    Specific mutation*


    If 'Other' what is the specific mutation?

    If you are unsure of the specific mutation, please email your genetic report to and we can help you find out. We also provide a pro forma letter you can send to your doctor, requesting the specific mutation.

    Making change happen for children and adults with Rett syndrome and related MECP2 disorders.

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