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The information contained in the Organizational Database (ODB) is provided for informational purposes only. There is no implied endorsement by NORD. NORD does not promote or endorse participation in any specific organization. The information is subject to change without notice. Every effort is made to ensure that the details for each entry are as current as possible.

CHARGE Syndrome Foundation, Inc.


141 Middle Neck Rd
Sand Point, NY 11050 USA





800 Number


Email Address

[email protected]


The CHARGE Syndrome Foundation, Inc., is a national, non-profit, voluntary agency that was established in 1993. Its mission is to establish, maintain, and distribute information about CHARGE syndrome and provide support to affected families. The foundation supports the dissemination of information about CHARGE syndrome, supports research into its cause and management, and works with other organizations and institutions to accomplish its mission. In addition, the CHARGE Syndrome Foundation hosts a biennial conference for affected individuals, families, physicians, and other professionals such as educators and therapists.

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