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Staying healthy with Rett Syndrome

Historically, Rett has been viewed as a degenerative condition with a poor prognosis. But recent research has shown that people with Rett Syndrome can live into their 50’s with adequate medical care.

Here is some information which can help you keep your child or adult with Rett safe and healthy until better treatments and our cure become available. This information includes links to the most up to date guidance and services which can help you manage specific symptoms such as constipation and sleep difficulties.

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.

Rett Syndrome Health Checklist

The Rett Disorders Alliance UK (Reverse Rett, Rett UK and FOXG1) are delighted to bring you the Rett Syndrome Health Checklist. The Health Checklist provides information to help with symptom identification and management including suggestions for drugs which may help and those which may cause difficulties for people with Rett Syndrome. There are also links to relevant research papers, case studies and best practice guidance.

Hospital Passport: Making trips to the hospital a little less stressful

Hospital visits can be an ordeal for children and adults with Rett and their families. From the basics like quickly informing treating clinicians how best to take blood, to more complex information like flagging up potential drug interactions, we hope the Reverse Rett hospital passport will help.

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.

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