Rett Registry UK

Do you want to install the Rett Registry UK web app to your device?

Rett Registry UK is the most comprehensive registry of Rett Syndrome patients in the UK, built and maintained by Reverse Rett.

But the app isn’t just a registry – it’s a comprehensive suite of features for the parents and carers of people with Rett Syndrome to reduce admin, link to useful resources, and connect up to the wider community.

We hope these features will make life so much easier for those who use it.

  • Security at its core

Security is built into the core of Rett Registry UK, with secure login, two-factor authentication, device recognition, and a host of other security features to protect your data. And our super-transparent data policies mean that you can always have confidence that your data is safe in our hands.

  • All your records in one place

We know how hard it is to keep track of hospital appointments, medications, different professionals, diagnoses, NHS numbers – especially when you need to summarise them quickly for a new doctor, emergency appointment or change of school.

You can now very easily add all these records to the app and download them to your device at a click, ready to view or share as a spreadsheet or PDF should the need arise.

  • Access to clinical trials

Being on the registry means that you’ll be asked whether you want to participate in clinical trials for innovative treatments being pioneered by pharmaceutical companies we partner with. The only way to have access to these is through the registry, so sign up to get all the news.

  • Health checklist built in

We’ve built the Rett Disorders Alliance’s Rett Syndrome Health Checklist into the app, with comprehensive advice, symptoms, research papers and guidance from health professionals and researchers all accessible to you in the app.

  • Community is key

In addition to all the features for individuals on the app, we know that the support of the community is so important, so we’ve built a forum for you to share helpful stories, ask for advice or discuss relevant topics.

You can open a new thread, tag it with keywords so that others can find it, post to the community, write responses to others, and upvote those super useful bits of advice so others can find them.

Why is it important to join?

"The best way for families to demonstrate the urgent need for UK clinical trials, emerging treatments and to assist the development of better clinical care for children and adults with Rett Syndrome, is to join the Rett Registry UK. Our strength in advocating for improved outcomes, treatments and cures is in numbers. Please add your loved one to the Registry today."


Rachael Stevenson, CEO Reverse Rett


If you're already signed up to Reverse Rett's Patient Registry, there's no need to do anything - you'll receive an automatic invite when it's ready.

If you're not signed up, register today and we'll get in touch!