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Aicardi Syndrome Awareness and Support Group
a/k/a: ASASG
Address:
29 Delavan Avenue
Ontario, M5P 1T2
Canada
Phone: (41-6) -481-4095
800 Number: --
TDD: --
Email Address: asasn@sympatico.ca
The Aicardi Syndrome Awareness and Support Group (ASASG) is a national self-help organization dedicated to providing information and support to Canadian families affected by Aicardi syndrome. It also acts as an information gathering and sharing resource for healthcare professionals. 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. ASASG was established in the late 1980s in coordination with the Aicardi Syndrome Newsletter, Inc. (see below). ASASG is committed to providing a network of information, communication, and support to families of children with Aicardi syndrome; strengthening and empowering families in becoming advocates for their affected children; gathering current research articles and findings regarding Aicardi syndrome and other related topics for distribution to member families; providing information about Aicardi syndrome to the public; and serving as a reference and resource contact for medical, educational, and professional organizations.
Website: http://www.aicardisyndrome.org/
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