CHARGE Syndrome Foundation Inc.

Cause Area

  • Children & Youth
  • Health & Medicine
  • People with Disabilities

Location

141 Middle Neck RoadSands Point, NY 11050 United States
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Organization Information

Mission Statement

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.

Description

CHARGE Syndrome is a rare genetic disorder affecting approximately one in 10,000 births. The condition varies with each person but typically includes heart defects, sensory impairment (including vision, hearing, smell and balance), mental retardation, genital problems, swallowing and feeding problems, airway problems, and other medical, developmental, and behaviorial issues. The CHARGE Syndrome Foundation sponsors a biennial international conference for professionals and families;publishes a quarterly newsletter, a manual for management of the syndrome, and other publications; supports research; and provides information, outreach, and other support to persons with CHARGE and their families.

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