Living with Rett Syndrome

Raising a child with Rett Syndrome can bring up many questions because the loss of skills and often complex symptoms of Rett Syndrome can affect many aspects of a child’s life.

Here you’ll find resources to help you manage your child’s daily needs and obtain the best care possible to help keep her safe and healthy until the treatments and cure we’re working for become available.

Staying healthy with Rett Syndrome

Recent research has shown that people with Rett Syndrome can live into their 50’s with adequate medical care. Read our information which can help you keep your child or adult with Rett Syndrome safe and healthy until better treatments and our cure become available.

Clinical Research

This is an exciting time in Rett Syndrome clinical research. Clinical trials are underway to treat key symptoms of Rett Syndrome and improve quality of life. The best way to get involved and stay updated about UK clinical trials and research is to register the person you care for on the Rett Registry UK.

Hospital Passport

It can be an anxious time when someone else cares for the person we love. We want the people supporting them to care for them appropriately and for the person we love to be appreciated for who they are.

A hospital passport allows your loved one to communicate with the medical staff. The passport is kept with their medical notes for the duration of their stay in hospital, and returned when they leave. It includes information such as their preferred name, likes and dislikes, as well as NHS number and emergency contact details, and an explanation of Rett Syndrome. All the things we take for granted when asked, but in a simple format for those who cannot communicate.

Download Hospital Passport PDF (16 pages)

Communication Passport

The Communication Passport template was produced for an individual girl with Rett Syndrome.

Complete your child’s details within the document and print so that you can send with your child to school, or wherever else she goes, giving you a way to provide insight into her needs and who she is, when you are not present.

More information about the communication passport

 

 

Register someone with Rett Syndrome

Please add the person you care for to the Rett Registry UK. Registering means we can contact you directly about clinical trials and the latest research. It also enables us to make a better case for improved clinical provision and better treatments to become available in the UK.

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