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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.

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

  • East Lothian Courier: Nina McKinney walking up North Berwick Law every day in February to help sister Eliza

    East Lothian Courier: Nina McKinney walking up North Berwick Law every day in February to help sister Eliza

    A seven year old schoolgirl has set herself the challenge of climbing North Berwick
  • In Your Area: Bereaved father raising funds for Manchester Road Park buddy bench in memory of his late son

    In Your Area: Bereaved father raising funds for Manchester Road Park buddy bench in memory of his late son

    The father of a little boy who had a rare condition called Rett Syndrome
  • Boxer, Brad Daws shows his support for Georgia and Reverse Rett

    Boxer, Brad Daws shows his support for Georgia and Reverse Rett

    Carl Greaves Promotions have been supporting Reverse Rett for a few years now and