About Rett syndrome

Rett syndrome is a rare non-inherited genetic postnatal neurological disorder that occurs almost exclusively in girls and leads to severe impairments, affecting nearly every aspect of the child’s life: their ability to speak, walk, eat, and even breathe easily. The hallmark of Rett syndrome is near constant repetitive hand movements while awake. Cognitive assessment in children with Rett syndrome is complicated, but we know that they understand far more than they can communicate to us, evidenced by their bright and attentive eyes, and their ability to express a wide spectrum of moods and emotions. 

Finding trusted information is the first step towards simplifying this journey.  The information found here is reliable, current and vetted by global experts in the field of Rett syndrome.

What is Rett syndrome?

Rett syndrome is a unique postnatal neurological disorder that is first recognized in infancy and seen almost always in girls, but can be rarely seen in boys.

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About the diagnosis and genetic testing

Welcome to Rettsyndrome.org.  We are glad you found us.  You have come to the right place for trusted information, family support, an exciting and solid research program and most importantly you have found HOPE!

For more information about the diagnosis and genetic testing, click HERE


Frequently asked questions (FAQ's)

Educate yourself. Learn what causes Rett syndrome, how it will affect your daily life.

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Find a list of common terms related to Rett syndrome. Some of these terms are used to describe conditions that explain Rett syndrome while others are used to rule out Rett syndrome.

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The Rett syndrome PSA [Video]

You can help secure airtime for our public service announcements. We have achieved 300 million audience impressions already on TV, cable and radio! Because of this PSA, we have reached more Rett families and have helped others find a correct diagnosis.

Watch the PSA


The history of Rett syndrome

In 1954, Dr. Andreas Rett, a pediatrician in Vienna, Austria, first noticed two girls as they sat in his waiting room making the same repetitive hand-washing motions.

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