Role of the International Rett Syndrome Association

Since 1984, the International Rett Syndrome Association has brought together families of girls with Rett syndrome, disseminated information about the syndrome, and supported research efforts. Through its computerized records, the Association can match parents most able to provide support for one another, refer parents to physicians familiar with Rett syndrome, keep accurate statistical records of the disease, and connect researchers with subjects willing to participate in investigations. The Association helps families adjust emotionally and practically to living with a Rett syndrome patient and works toward long-term answers by promoting understanding and improved treatment for the condition.