NORD's
Washington Office
 Read about events on Capitol Hill, funding for rare-disease research, and other topics of interest from NORD's office in Washington, DC.
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**IMPORTANT**
The information contained in the Organizational Database (ODB) is provided for informational purposes only. There is no
implied endorsement by NORD. NORD does not promote or endorse participation in any specific organization. The information
is subject to change without notice. Every effort is made to ensure that the details for each entry are as current as possible.
Aicardi Syndrome Newsletter, Inc.
a/k/a: ASN
Address:
1510 Polo Fields Ct
Louisville, KY 40245
USA
Phone: 502-244-9152
Fax: --
800 Number: --
TDD: --
Email Address: AICNews@aol.com
The Aicardi Syndrome Newsletter, Inc., is a voluntary, non-profit organization dedicated to providing a network of information and support to families with children who have Aicardi syndrome and strengthening and empowering families in becoming advocates for their children. Aicardi syndrome, an extremely rare genetic disorder that affects only females, is characterized by absence of the thick band of nerve fibers that connects the left and right hemispheres of the brain (agenesis of the corpus callosum), seizures and spasms, characteristic retinal lesions, mental retardation, and/or other abnormalities. The newsletter provides current research, articles, and findings regarding Aicardi syndrome for member families. In addition, it distributes information about Aicardi syndrome to the public and serves as a reference and resource contact for medical, education, and professional organizations. Aicardi Syndrome Newsletter, Inc., provides several educational materials including reports, brochures, and a bibliography of published journal articles. Biennial international conferences are held in the U.S. every other (even) year.
Website: http://www.aicardisyndrome.org/site/node/3
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