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Staying healthy with Rett Syndrome

Historically, Rett Syndrome 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 Syndrome 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 Syndrome and it’s a single one. Rett Syndrome 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 Syndrome 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 Syndrome 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.

Click here to download yours

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

  • Clear about a cure

    Clear about a cure

    by Rachael Stevenson When Reverse Rett was founded back in 2010, it was not
  • How we can help with CIPP Rett Centre referral

    How we can help with CIPP Rett Centre referral

    The CIPP Rett Centre is a clinical treatment and research centre for children and
  • This week’s Trofinetide announcement

    This week’s Trofinetide announcement

    Much excitement has been generated across the UK Rett community this week due to the