Aicardi syndrome
Organizations
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.
References
- http://ouraicardilife.org/
- https://www.aicardisyndromefoundation.org
More Organizations Content
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
Email: web@aicardisyndrome.org
Website: www.aicardisyndrome.org
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
Email: Info@thearc.org
Website: www.thearc.org
March of Dimes
1275 Mamaroneck Avenue
White Plains, NY 10605
Phone: 914.997.4488
Toll-free: 888.MODIMES (663.4637)
Fax: 914.428.8203
Email: askus@marchofdimes.com
Website: www.marchofdimes.com
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
Email: orphan@rarediseases.org
Website: www.rarediseases.org
National Eye Institute (NEI)
National Institutes of Health, DHHS
31 Center Drive, Rm. 6A32 MSC 2510
Bethesda, MD 20892-2510
Phone: 301.496.5248
Email: 2020@nei.nih.gov
Website: www.nei.nih.gov
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
Email: nimhinfo@nih.gov
Website: www.nimh.nih.gov
