Rett Registry UK is the most comprehensive registry of patients with Rett syndrome and MECP2 Duplication syndrome in the UK.

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.

UK patient organisations, Reverse Rett, Rett UK and Cure MDS UK are working in partnership to encourage families and carers of children, young people and adults with Rett syndrome to sign up to the Registry without delay, to support our collaborative effort to develop the tools and resources needed to bring treatments for Rett syndrome home.

Rett Registry UK has been built and maintained by Reverse Rett.

  • 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.

Amplifying voices, accelerating progress

We firmly believe when it comes to readying the MECP2 Duplication Syndrome Community for potential clinical trials there is great strength in numbers, only achieved through collaboration. Representing all those affected by associated MECP2 disorders in one unified place, alongside Reverse Rett and Rett UK, is an essential step forward in demonstrating our small but determined community's willingness to strive for a better future for our loved ones by engaging with researchers searching for treatments and cures.

Oliver Freeman, Cure MDS UK

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

Rett UK and Reverse Rett have worked together on smaller collaborative projects before but with new therapies for Rett syndrome becoming a reality, a unified approach and voice is essential for our community. Representing the UK Rett community as accurately as possible has never been as vital as it is now which is why our partnership not only makes sense but is essential.

Rob Adamek, CEO Rett UK


Please register here. If you think you have already registered, but are not sure how to access the registry, please get in touch.