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Who Are We?

Dear Parents, Guardians and Caregivers,

The CHARGE Syndrome Foundation, Inc. is an organization of parents and professionals that grew out of a desire to help make life a little easier for families living with CHARGE syndrome.

The Foundation is a non-profit organization that provides information to families and professionals working with individuals with CHARGE. We also sponsor a biennial conference and fund CHARGE syndrome research. To offset some of these expenses, our annual membership fee is $30. Lifetime memberships are also available. We invite you to become a member of the Foundation.

You can find additional information about the Foundation on our website. You can contact us by calling (800) 442-7604 or by email info@chargesyndrome.org.

The services provided by the Foundation include:

The CHARGE Syndrome Foundation Website, chargesyndrome.org, provides information on CHARGE syndrome, the Foundation Board of Directors, committees, conferences, and resources. It also provides links to sites for support such as a families page, deaf-blind resources, and links to our Facebook page and Facebook group. You can also read issues of our newsletter, CHARGE Accounts.

The CHARGE Syndrome Management Manual for Parents is a must for every family. The manual includes medical information for both families and professionals, developmental and educational information, a glossary, and a listing of resources. The Manual is available for download in English and Spanish.

Parent Support: A member of our team can answer your questions and direct you to available resources in your area, including parent contact lists for local families and a list of professionals familiar with CHARGE.

Biennial Conference: The International CHARGE Syndrome Conference is held every two years. The purpose of the conference is to bring together families and professionals who have a common interest in CHARGE syndrome in order to discuss the latest medical, educational, and advocacy information available and to share experiences for mutual support. There are scholarships available to assist those families attending the conference. Please check the Conference Information Page for information about prior and upcoming conferences.

CHARGE Syndrome Fact Sheet >