The CHARGE Syndrome Foundation, Inc. is a non profit, charitable organization that was established in 1993 by professionals who had worked with individuals with CHARGE syndrome and by parents of children with CHARGE syndrome. The Foundation is governed by a Board composed of 12 members. The Board is unique because the majority of the Board must be comprised of individuals who have a family member with CHARGE syndrome. Special advisors to the Board provide assistance in program development. The day to day management of the Foundation is carried out by the officers.