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Below you can find resources that will help you look after someone with Rett syndrome and information about new symptoms and pathways for managing symptoms.
Going into hospital with someone with Rett syndrome can be challenging. It is always best if possible for someone with Rett syndrome to be accompanied by a family member or caregiver who knows them well enough to know when something is wrong and how to look after them on a day to day basis.
Having a Hospital Passport is useful incase there are times when someone with Rett syndrome cannot be supported by someone familiar in hospital for example, if they were to end up going to hospital straight from school. 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.
Download Hospital Passport PDF (16 pages)
The Communication Passport template was produced by the parent of a young person with Rett syndrome and is a brilliant way to communicate all the various needs that your child or adult has and a blueprint for looking after them, should anything happen to you.
This document is set up so that you can edit it directly and then print or save as a PDF and send to school or wherever else she or he goes, giving you a way to provide insight into their needs and who they are, when you are not present.
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.
