Communication Passport

Loving someone with limited communication can mean that someone else caring for them can be greatly anxiety inducing because we want the people supporting them to care for them appropriately and for the person we love to be appreciated for who they are.

Below you can find a link to a template for a Communication Passport that was produced for an individual girl with Rett Syndrome.

The document provides a way for parents and carers to provide their valuable insight to professionals regarding your child, when you are not present.

You can complete your child’s details within the document and print so that you can send with your child to school, college day services etc.

 

Our special thanks to Catriona and Amy for enabling other families to benefit from their time and experience!

2018 Rett Communication Passport template

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    On June 18th, Neurogene provided an update on the first “high dose” patient in
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    Neurogene press release: NGN-401 Gene Therapy for Rett Syndrome Selected by FDA for START Pilot Program

    On June 3rd, Neurogene announced that the FDA has chosen their Rett syndrome gene