Self Help Clearinghouse

CHARGE Syndrome

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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, ear malformations). Publications include CHARGE syndrome brochure, New Parent packet (12+ pgs.), 'CHARGE Syndrome: A Management Manual for Parents' (270 pgs.), Professional packet (35+ pages) and conference papers. Membership ($15/families; $20/professionals; $30/organizations) includes quarterly newsletter and parent-to-parent support. Moderated online support activities. Conferences in odd years (e.g. 2005).
Write:
CHARGE Syndrome
2004 Parkade Blvd.
c/o Marion A. Norbury
Columbia, MO 65202-3121
Voice: 1-800-442-7604
Website: http://www.chargesyndrome.org
E-mail: marion@chargesyndrome.org
Verified: 9/9/2008

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