Newly diagnosed?


If your child has recently been diagnosed with Rett Syndrome, you will no doubt have many questions, about now, about the future and about what you can do to help your child.

Please know that you are not alone. Here you can find answers to some key questions that fellow parents have identified as questions they had before, after or during their child's diagnosis.

Please also follow these three important steps:

Register your child

Reverse Rett holds the only current and up to date, accurate patient registry for children and adults with Rett Syndrome and related disorders in the UK.

Registering your child with us means that we can reach out to you immediately as and when clinical trials which may be appropriate for your child become available.

The first UK clinical trials for patients with Rett Syndrome over the age of 13 are already underway. We expect that further UK trials will emerge in the next 12-18 months.

Registering your child does not mean you are giving consent for the person you care about to be part of a trial, only that you are consenting to being contacted by Reverse Rett.

You can register by filling in the form at the bottom of this page.

Talk to us

All of us at Reverse Rett are family members of a person with Rett Syndrome. We have been living with Rett Syndrome for many years and working intensively to speed treatment since 2010. Please feel free to call any of us with any questions you may have, or just to talk. Call us on 0161 413 0586 or email enquiries@reverserett.org.uk

Stay informed

There is up to date information about research and the efforts of families across the UK to help speed treatment on our website news section and social media platforms. Please have a look.

Register with Reverse Rett

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 rachael@reverserett.org.uk

Read our privacy policy here


Reverse Rett Registry