There is hope now like never before.

In 2021, Rett Syndrome is still a debilitating and life-changing condition.

But for children being diagnosed with Rett Syndrome today, there is much hope.

The research landscape has changed drastically in the last few years and there are now three gene therapy clinical trials on the horizon and treatments for symptomatic improvements already being tested.

This may not mean much in the immediate aftermath of the diagnosis. There is so much to deal with on both an emotional and a practical level. 

But you should know that Rett Syndrome may not be the life sentence it has been until now. We are moving into an era of trialling treatments which could transform the lives of children living with Rett Syndrome today. Amongst all the things that are difficult right now, here is a glimmer of light. The time is coming, when there will be treatment for Rett Syndrome.



Diagnosis questions

A Rett Syndrome diagnosis is devastating. However isolated you feel now, know that there are others who have lived through this. Here, fellow parents have identified some key questions they had before, during and after their child’s diagnosis of Rett Syndrome.



Guide for newly diagnosed parents

 ‘Never Give Social Workers Tea’ is not a comprehensive guide to Rett Syndrome and all the complexities which life with Rett Syndrome may bring. It’s just some simple and practical thoughts on how to survive the immediate aftermath of a diagnosis, which has has been written heart-to heart, by people who have stood where you stand today. Order your FREE* copy by filling out the form below.

Please allow 7-10 days for delivery. One free copy per person. For more copies, there is a small charge of £3 plus p&p.

    Please note, if you are a parent living outside the UK, that this guide is fairly UK centric in terms of reference to services etc., but we will still send out if you feel it may be helpful in other ways. Delivery times will obviously be longer depending on your location so please bear with us.

    The design and printing of this guide was funded through a generous grant from the MBNA Foundation.

    Illustrations have been created pro bono by the extraordinarily talented and kind, Hazel Bee.

    Do something: Rett Registry UK

    Please add your newly diagnosed child to the Rett Registry UK. Signing up means we can contact you directly about clinical research opportunities and clinical trials. Being able to count your child also enables us to make the case for improved medical care and treatments in the U.K. Registering here is not the same as signing up for our newsletter, you will only be contacted about Registry related issues. It takes minutes to register.

    Together we’re making change happen

    Find out more about Rett Syndrome research and why we are so hopeful about the potential for treatments and a cure here.

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