Israel Rett Syndrome Association

Founded in 2003 by families of patients with Rett Syndrome. The Association established with the aim of coordinating the efforts to advance the research, treatment, knowledge and training in the field of Rett Syndrome. Its vision is to accelerate finding a cure for patients with Rett Syndrome by funding breakthrough medical research and improving patient care and quality of life. Objectives: Encouraging and supporting research designed to advance knowledge and understanding of the syndrome's cure and treatment. Raising awareness and spreading knowledge about the syndrome. Providing support, guidance and counseling to patients and their families. Promoting the rights of patients among institutional bodies.Rett Syndrome is a very severe developmental neurological disorder. It is a genetic and non-hereditary syndrome and therefore can occur in any family. Until recently, it was thought to affect one in 10,000 girls. Today many researchers believe that the prevalence of Rett Syndrome is much higher. In many cases, girls are misdiagnosed (eg autism) which prevents them from receiving appropriate treatment. Although uncommon, boys may suffer from this syndrome.Girls with Rett Syndrome seem to be developing normally up to the age of six to 18 months. Then there is a gradual loss of communication and hands ability. At the same time, stereotypical hand movements, communication difficulties, mobility difficulties, and movement planning appear. Most children also develop epileptic seizures, irregular breathing, scoliosis, decreased muscle mass and motor control problems. Girls with Rett Syndrome usually live to adulthood, if there are no complications or severe illnesses. However, the rate of unexplained sudden death is higher in girls with Rett Syndrome relative to the general population.