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AFBAmerican Foundation®
for the Blind

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CHARGE Syndrome Foundation - AFB Directory Profile

General Information

CHARGE Syndrome Foundation
318 Half Day Road #305
Buffalo Grove, IL 60089
(516) 684-4720 (Local)
(888) 317-4735 (Fax)
(800) 442-7604 (Toll-Free)
info@chargesyndrome.org
http://www.chargesyndrome.org/

Brief Description

The mission of the CHARGE Syndrome Foundation is to provide support to individuals with CHARGE syndrome and their families; to gather, develop, maintain and distribute information about CHARGE syndrome; and to promote awareness and research regarding its identification, cause and management.

Number of staff: 2
Staff description: Database Specialist - part time Director of Outreach - part time. Separate toll free number. 1-855-5CHARGE
Geographic area served: International
Publications: New Parent Folder, Professional Packet, Management Manual for Parents in English and Spanish, quarterly newsletter, brochure

Locations

CHARGE Syndrome Foundation
318 Half Day Road #305
Buffalo Grove, IL 60089

Staff

Jackie Alshawabkeh, Database Specialist
Sheri Stanger, Director of Outreach, (855) 524-2743, sheri@chargesyndrome.org

Services Offered

Services for Children

  • Information and Referral
    • The CHARGE Syndrome Foundation provides information to parents of children with CHARGE syndrome, Individuals with CHARGE and Professionals who treat individuals with CHARGE. We connect families to resources, professional deaf-blind organizations and each other. We offer a Provider Database, parent to parent contact lists, web site, quarterly newsletter, e-news, an international bi-ennial conference and Facebook Group.
  • Support for Parents
    • A Director of Outreach provides a first point of contact for new parents and ongoing support for parents that have a child of any age with CHARGE syndrome. The Director of Outreach provides support, parent connections, information about resources and connections to professional organizations. The Foundation provides a Parent Management Manual, a New Parent Packet, a Facebook Group, a list serv and a bi-ennial international family conference.

Events

13th International CHARGE Syndrome Conference- Taking CHARGE in Orlando

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