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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.

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

  • Reverse Rett Weekly Blog

    Reverse Rett Weekly Blog

    We produce a weekly blog to share what we’ve been up to, information from
  • ‘Cruel’ disease robbed little girl of speech and movement months after she learnt to walk and talk

    ‘Cruel’ disease robbed little girl of speech and movement months after she learnt to walk and talk

    Ben Stewart is fighting to raise funds for research into Rett Syndrome, a rare
  • Mapping clinical provision for children and adults with Rett Syndrome in the UK

    Mapping clinical provision for children and adults with Rett Syndrome in the UK

    Navigating the clinical care system for children and adults with Rett Syndrome in the