Rett Syndrome is a debilitating, life-changing condition. But never forget, there is hope. And you are not alone.

Immediately after diagnosis, most parents are overwhelmed. Some are scared, some are angry, all are worried about the future. We’re not here to sugarcoat things but we are here to offer hope. We know the gene that causes Rett Syndrome and there has been a steady uptick in research progress over the last decade, giving families more reasons to be hopeful than ever before.

Diagnosis questions

A Rett 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 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.

Add your child to the UK Rett Syndrome Patient Registry.

If you feel helpless, or powerless in the face of a recent Rett diagnosis, please add your child to the UK Rett Syndrome Patient Registry at Reverse Rett. Signing up means we can contact you directly about clinical trials, the latest research and enables us to make a better case for improved clinical provision and better treatments to become available in the UK.

Together we’ll deliver a cure

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

Latest news

  • Sing-A-Long with The Beatles: 10th February 2019

    Sing-A-Long with The Beatles: 10th February 2019

    A Sing-A-Long-With the Beatles charity event will take place at Muswell Hill & Highgate
  • Cambridge Half Marathon: 3rd March 2019

    Cambridge Half Marathon: 3rd March 2019

    Join Team Reverse Rett in the Saucony Cambridge Half Marathon on 3rd March 2019.
  • Race Night – Edinburgh: 30th March 2019

    Race Night – Edinburgh: 30th March 2019

    There will be a Race Night in honour of Ellie on Saturday 30th March