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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 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 which you can link to at the bottom of this page.

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.

Download Hospital Passport

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.

Find out more

 

 

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.

Latest news

  • Willow Foundation – great stuff for adults with Rett!

    Willow Foundation – great stuff for adults with Rett!

    The Willow Foundation: Treats for adults with Rett!  Last month one of our Bitesize
  • Speechless for Rett Syndrome

    Speechless for Rett Syndrome

    Could you go without talking, texting or typing for 4 hours? How about 8
  • Taysha survey data presented in posters at IRSF Scientific Conference, Nashville in April 2022 

    Taysha survey data presented in posters at IRSF Scientific Conference, Nashville in April 2022 

    Last year we worked in partnership with Taysha Gene Therapies and other Rett patient