Below you can find resources that will help you look after someone with Rett syndrome and information about pathways for managing symptoms.
Emergency health plans and/or hospital passports work well when alert cards cannot convey enough information or when there are specific issues affecting a patient which need to be highlighted.
This alert card provides:
To get your Alert Card, you must be registered on the Rett Registry UK. Email us to let us know if you have not received your card within a week of registering [email protected]
Sign up for Rett Registry UK here.
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.