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:
We want to help so please register. Once you register your child with us, we will send you information that will help you cope with the diagnosis and keep you updated with research developments.
Registering your child with us will also help us demonstrate areas of unmet need in terms of clinical or medical provision for people with Rett Syndrome in the UK.
In 2016, there are also a number of potential treatments for Rett Syndrome emerging and it is likely that we will see an increasing number of clinical trials happening internationally.
It is vital that we have basic demographic and contact information for as many UK Rett patients as possible so that we can demonstrate that the need and responsiveness exists in this country for a UK trial to happen.
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.
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 434 8117 or email email@example.com
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.
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 firstname.lastname@example.org