Aicardi syndrome


Are there good support groups for Aicardi syndrome?

Families can register their child using sites such as Our Aicardi Life or the Aicardi Syndrome's Foundation website to receive newsletters and to read stories about other families with children with Aicardi syndrome. Additionally, popular social media sites such as Facebook can be great a great resource for connecting with other families who have had someone with Aicardi syndrome.

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What are some organizations associated with Aicardi syndrome?

What are some organizations associated with Aicardi syndrome?

Aicardi Syndrome Foundation

P.O. Box 3202

St. Charles, IL 60174

Phone: 800.374.8518



The Arc of the United States

1825 K Street, NW, Suite 1200

Washington, DC 20006

Phone: 202.534.3700

Toll-free: 800.433.5255

Fax: 202.534.3731



March of Dimes

1275 Mamaroneck Avenue

White Plains, NY 10605

Phone: 914.997.4488

Toll-free: 888.MODIMES (663.4637)

Fax: 914.428.8203



National Organization for Rare Disorders (NORD)

55 Kenosia Avenue

Danbury, CT 06810

Phone: 203.744.0100

Voice Mail: 800.999.NORD (6673)

Fax: 203.798.2291



National Eye Institute (NEI)

National Institutes of Health, DHHS

31 Center Drive, Rm. 6A32 MSC 2510

Bethesda, MD 20892-2510

Phone: 301.496.5248



National Institute of Mental Health (NIMH)

National Institutes of Health, DHHS

6001 Executive Blvd. Rm. 8184, MSC 9663

Bethesda, MD 20892-9663

Phone: 301.443.4513

Toll-free: 866.415.8051

TTY: 301.443.8431

Fax: 301.443.4279



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