CHARGE Syndrome Foundation, Inc.
141 Middle Neck Road
Sands Point, NY 11050
The mission of the CHARGE Syndrome Foundation is to provide support to individuals with CHARGE syndrome and their families; to gather, develop, maintain and distribute information about CHARGE syndrome; and to promote awareness and research regarding its identification, cause and management. A major activity of the Foundation Office is to provide information and support to more than 400 members composed of both families and professionals – and especially to families with a newly identified child with CHARGE syndrome. The Foundation makes its publications – including a newsletter and a manual for families – and resources available to families and the professionals who serve these families. The Foundation maintains contacts with professionals from around the world and supports research on CHARGE. The major activity of the Foundation is its biennial conference for families and professionals.