CHARGE Syndrome
CHARGE syndrome (or CHARGE Association) is a very rare disorder that includes people who share a specific set of challenges present at birth. The word “CHARGE” comes from the first letters of some of the most common features seen in these individuals. The letters in CHARGE stand for: Coloboma of the eye, Heart defects, Atresia of the choanae, Retardation of growth and/or development, Genital and/or urinary abnormalities, and Ear abnormalities and deafness.
This disorder was first identified in 1981. It is believed that CHARGE is greatly under-diagnosed. When awareness is increased, it will be recognized as one of the leading causes of deaf-blindness.
Associations/Groups:
The CHARGE Syndrome Foundation was formed in 1993.
CHARGE Syndrome Foundation
318 Half Day Road #305
Buffalo Grove, IL 60089
Phone: 516-684-4720
Toll Free: 800-442-7604
Outreach Line: 855-524-2743
Email: info@chargesyndrome.org
Other Information:
CHARGE Syndrome – US National Library of Medicine
New Parent Information Packet available to callers. Call Charge Syndrome Foundation to locate other parents in your area.
Phone: 800-442-7604
Email: info@chargesyndrome.org
Similar conditions: Other conditions that have overlapping features include VATER/VACTERL association, velocardiofacial (VCF) syndrome, and prenatal retinoic acid (Accutane) exposure.
Fact Sheet last updated on: 2/14/2023
Disclaimer: INDEX is pleased to provide you this information. Please note, this information is not comprehensive, nor is it intended to take the place of professional advice. We encourage you to check other resources of such information. No endorsement by the University of Massachusetts Chan Medical School, DisabilityInfo.org, INDEX, or affiliates, should be inferred. We reserve the right to remove, to modify, or to add any information at any time, for any reason, and without notice.
Any information you may provide to update or further complete this information would be appreciated. Please contact us with comments. We appreciate your help.
