The CHARGE Syndrome Foundation is a nonprofit organization dedicated to improving the lives of individuals with CHARGE syndrome, a rare genetic disorder that affects multiple parts of the body. The Foundation is committed to providing support, education, and advocacy for individuals with CHARGE syndrome and their families, as well as funding research to better understand the disorder.
The CHARGE Syndrome Foundation was established in 1999 by a group of parents of children with CHARGE syndrome. Since then, the Foundation has grown to become a leading source of information and support for families and healthcare professionals worldwide. The Foundation offers a range of programs and services, including an annual conference, a family directory, a medical advisory board, and a research grant program.
The Foundation is driven by a dedicated group of volunteers, including parents, healthcare professionals, and individuals with CHARGE syndrome. With their support, the Foundation is able to provide resources and support to families and individuals affected by CHARGE syndrome, and work towards improving the lives of those living with the disorder.
