Massachusetts Network of Information Providers Fact Sheet
Disability/Illness Description: 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:
| C = coloboma, H = heart defects, A = atresia of the choanae, R = retardation of growth and development, G = genital and urinary abnormalities, E = ear abnormalities and/or hearing loss. The diagnosis of CHARGE is based on finding several of these and possibly other features in a child. The diagnosis should be made by a medical geneticist who has ruled out other disorders with overlapping findings |
This disorder was first identified in 1981. It is believed that CHARGE is greatly under-diagnosed and that, 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, Inc.
2004 Parkade Blvd
Columbia, MO 65202
800-442-7604
Email: marion@chargesyndrome.org
http://www.chargesyndrome.orgCharge Syndrome Foundation has New Parent Information Packet available to callers. Call Charge Syndrome Foundation to locate other parents in your area.
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: 01/18/2008
Disclaimer: The Massachusetts Network of Information Providers for People with Disabilities (MNIP) is pleased to be able to provide this information. Please Note: Information in this fact sheet is provided as a service. It is not comprehensive, nor does it take the place of legal advice. The user is encouraged to check references for resources provided, and to keep in mind that the names of providers or additional sources of further information are intended as referrals only; no endorsement by MNIP or this agency should be inferred.
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