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Genetic and Rare Diseases Information Center (GARD)

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Sotos syndrome

Other Names for this Disease
  • Cerebral gigantism
  • Distinctive facial appearance, overgrowth in childhood, and learning disabilities or delayed development
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.


Organizations Supporting this Disease

Social Networking Websites

  • is a Web site and blog that collects firsthand stories from people facing issues, making tough decisions, and using genomic (DNA) information in their own healthcare. Click on the link to learn from their experiences and/or submit your own story.
  • RareShare is an online social hub dedicated to patients, families and healthcare professionals affected by rare medical disorders.

Organizations Providing General Support

  • American Association on Intellectual and Developmental Disabilities
    444 North Capitol Street, NW
    Suite 846
    Washington, DC 20001-1512
    Toll-free: (800) 424-3688
    Telephone: (202) 387-1968
    Fax: (202) 387-2193

  • Genetic Alliance
    4301 Connecticut Avenue NW
    Suite 404
    Washington, DC 20008-2369
    Telephone: 202-966-5557
    Fax: 202-966-8553

  • National Organization for Rare Disorders (NORD)
    55 Kenosia Avenue
    PO Box 1968
    Danbury, CT 06813-1968
    Toll-free: 800-999-6673 (voicemail only)
    Telephone: 203-744-0100
    TTY: 203-797-9590
    Fax: 203-798-2291

  • The Society for Developmental and Behavioral Pediatrics
    6728 Old McLean Village Drive
    McLean, VA 22101
    Telephone: 703-556-9222