You are here: Home / Rare Disease Information / Patient Organizations Database

Search Patient Organizations

Enter organization name or disease name to search for organizations that help people with rare diseases.

0-9 - A - B - C - D - E - F - G - H - I - J - K - L - M - N - O - P - Q - R - S - T - U - V - W - X - Y - Z

**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 Awareness and Support Group

a/k/a: ASASG

Address

29 Delavan Avenue
Ontario, M5P 1T2
Canada

Phone

416-481-4095

800 Number

--

TDD

--

Email Address

asasn@sympatico.ca

Website

http://www.aicardisyndrome.org/

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.

0-9 - A - B - C - D - E - F - G - H - I - J - K - L - M - N - O - P - Q - R - S - T - U - V - W - X - Y - Z

NORD's Rare Disease Information Database is copyrighted and may not be published without the written consent of NORD.

 
Copyright ©2014 NORD - National Organization for Rare Disorders, Inc. All rights reserved.
The following trademarks/registered service marks are owned by NORD: NORD, National Organization for Rare Disorders, the NORD logo, RareConnect. .