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   Aicardi Syndrome
  
Reviewed  07-01-2001  

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Table of Contents (click to jump to sections)

What is Aicardi Syndrome?
Is there any treatment?
What is the prognosis?
What research is being done?

Organizations

What is Aicardi Syndrome?
Aicardi syndrome is a rare disorder characterized by the partial or complete agenesis (absence) of the corpus callosum (the structure that links the 2 hemispheres of the brain), infantile spasms (a form of childhood seizure), mental retardation, and an ocular (eye) abnormality called lacunae (lesions) of the retina of the eye. Aicardi syndrome may be associated with other brain defects such as microcephaly (small brain) or porencephalic cysts (cerebrospinal fluid-filled cavities or gaps in the brain). Onset of Aicardi syndrome generally begins between the ages of 3 and 5 months. The disorder affects only females.

Is there any treatment?
There is no cure for Aicardi syndrome nor is there a standard course of treatment. Treatment, which is symptomatic, generally involves management of seizures and intervention programs for mental retardation

What is the prognosis?
The prognosis for individuals with Aicardi syndrome varies according to the presence and severity of symptoms.

What research is being done?
The NINDS supports and conducts research on neurogenetic disorders such as Aicardi syndrome. The goals of this research are to find the genes involved in these disorders and to learn more about them. Finding the genes could lead to an effective means to treat and prevent disorders such as Aicardi syndrome.

Select this link to view a list of studies currently seeking patients.

 Organizations

Aicardi Syndrome Foundation
P.O. Box 3202
St. Charles, IL 60174
aicardi@aol.com
http://www.aicardisyndrome.org
Tel: 800-374-8518

Aicardi Syndrome Newsletter, Inc.
1510 Polo Fields Court
Louisville, KY 40245
aicnews@aol.com
Tel: 502-244-9152
Fax: Same

The Arc of the United States
1010 Wayne Avenue
Suite 650
Silver Spring, MD 20910
Info@thearc.org
http://www.thearc.org
Tel: 301-565-3842
Fax: 301-565-3843 or -5342

March of Dimes Birth Defects Foundation
1275 Mamaroneck Avenue
White Plains, NY 10605
askus@marchofdimes.com
http://www.marchofdimes.com
Tel: 914-428-7100 888-MODIMES (663-4637)
Fax: 914-428-8203

National Organization for Rare Disorders (NORD)
P.O. Box 1968
(55 Kenosia Avenue)
Danbury, CT 06813-1968
orphan@rarediseases.org
http://www.rarediseases.org
Tel: 203-744-0100 Voice Mail 800-999-NORD (6673)
Fax: 203-798-2291

National Eye Institute (NEI)
National Institutes of Health
Bldg. 31, Rm. 6A32
Bethesda, MD 20892-2510
2020@b31.nei.nih.gov
http://www.nei.nih.gov
Tel: 301-496-5248 Professionals 800-869-2020

National Institute of Child Health and Human Development (NICHD)
National Institutes of Health
Bldg. 31, Rm. 2A32
Bethesda, MD 20892-2425
NICHDClearinghouse@mail.nih.gov
http://www.nichd.nih.gov
Tel: 301-496-5133 800-370-2943

National Institute of Mental Health (NIMH)
6001 Executive Blvd.
Rm. 8184, MSC 9663
Bethesda, MD 20892-9663
nimhinfo@nih.gov
http://www.nimh.nih.gov
Tel: 301-443-4513 TTY: 301-443-8431 Depression Info: 800-421-4211 Anxiety Info: 88-88-ANXIETY (269-4389) Panic Info: 888-64-PANIC (64-72642)
Fax: 301-443-4279


NINDS health-related material is provided for information purposes only and does not necessarily represent endorsement by or an official position of the National Institute of Neurological Disorders and Stroke or any other Federal agency. Advice on the treatment or care of an individual patient should be obtained through consultation with a physician who has examined that patient or is familiar with that patient's medical history.

All NINDS-prepared information is in the public domain and may be freely copied. Credit to the NINDS or the NIH is appreciated.


Provided by:
The National Institute of Neurological Disorders and Stroke
National Institutes of Health
Bethesda, MD 20892




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