CHARGE Syndrome

Self Help Clearinghouse

CHARGE Syndrome Foundation, Inc.

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).
Write:
CHARGE Syndrome Foundation Inc.
141 Middle Neck Rd.
Sands Point, NY 11050
Voice: 1-800-442-7604 or 516-684-4720
Website: http://www.chargesyndrome.org
E-mail: info@chargesyndrome.org
Verified: 7/11/2012


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