Rett Syndrome

Rett syndrome is a rare non-inherited genetic postnatal neurological disorder that occurs primarily in girls and more rarely in boys. Rett syndrome leads to severe impairments, affecting nearly every aspect of the child’s life. 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. Rett syndrome is an incredibly complex disorder that will require a multi-pronged approach to treat and cure. Our unwavering strategy focuses on treatment medications, gene therapy and neuro-habilitative therapies, and we are bringing the first and only treatment that addresses the underlying biology for Rett syndrome into the final phase of clinical testing. The age when symptoms appear varies, but most babies with Rett syndrome seem to grow normally for the first 6 months before any signs of the disorder are obvious. The most common changes usually show up when babies are between 12 and 18 months, and they can be sudden or progress slowly. Children with Rett syndrome also tend to become tense and irritable as they get older. They may cry or scream for long periods of time, or have long fits of laughter.Symptoms of Rett syndrome usually don’t improve over time. It’s a lifelong condition. Often, the symptoms worsen very slowly, or don’t change. It’s rare for people with Rett syndrome to be able to live independently.