Self Help Clearinghouse
This information is provided as a resource and does not constitute an endorsement for any group. It is the responsibility of the reader to decide whether a group is appropriate for his/her needs. For evidence-based information on diseases, conditions, symptoms, treatment and wellness issues, continue searching this site.
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).
CHARGE Syndrome Foundation Inc.
141 Middle Neck Rd.
Sands Point, NY 11050
The above information was "verified" as correct on the date at the end of each entry. Since American Self-Help Group Clearinghouse's database is extensive but staffing is limited and information for these organizations can change, it is not possible to keep every entry in American Self-Help Group Clearinghouse database completely current and accurate. Please check with the organizations listed for the most current information.
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