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Living with Rett Syndrome

Raising a child with Rett Syndrome can bring up many questions because the loss of skills and complex symptoms of Rett 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 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.

Hospital 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.

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Communication Passport

This 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.

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Change is not only possible, it is within reach.

The most important thing to remember is that there is hope. We know the gene that causes Rett and it’s a single one. Rett has already been reversed in the lab. We’re not raising money for something abstract, we’re working to bring treatments and a cure for Rett home.

Latest news

  • Edinburgh News: Linlithgow granddad cycles 185 miles across Outer Hebrides for charity

    Edinburgh News: Linlithgow granddad cycles 185 miles across Outer Hebrides for charity

    A caring granddad has returned from a gruelling 185-mile cycle ride across the Outer
  • Lovesurf launches ‘Hope is my Superpower’ range

    Lovesurf launches ‘Hope is my Superpower’ range

    Lovesurf is an ethical clothing and accessories brand based in North Berwick, Scotland. Mary-Clare
  • Accessing UK clinical trials for children and adults with Rett Syndrome

    Accessing UK clinical trials for children and adults with Rett Syndrome

    Registering your child or adult with Rett Syndrome on the UK Rett Syndrome Patient