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International network. Founded 1993. Networking of families affected by CHARGE Syndrome (coloboma of the eye, heart malformations, atresia of the nasal passages, retardation of growth and/or development, genital hypoplasia and ear malformations). Publications include CHARGE syndrome brochure, New Parent packet (12+ pgs.), 'CHARGE Syndrome: A Management Manual for Parents' (270 pgs.), Professional packet (35+ pgs.) and conference papers. Membership $25 (families); $40 (professionals) includes quarterly newsletter and parent-to-parent support. Moderated online support activities. Conferences in odd years (e.g. 2005).
CHARGE Syndrome Foundation Inc.
141 Middle Neck Rd.
Sands Point, NY 11050