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Sotos Syndrome Support Association

Last Update:12/5/2017
Contact:
Title:
Address:P.O. Box 4626
Wheaton, IL 60189
County:Nationwide
Phone:
Toll Free:888-246-7772
Fax:
TDY:
E-Mail:
Website:www.sotossyndrome.org
Mission

A social support environment for professionals and families of individuals affected by Sotos Syndrome so they can meet, exchange ideas and help one another cope with the condition.

Program Description

The National Sotos Syndrome Association supports families and professionals nationally around this rare syndrome. Services include:

  • An understanding of the condition through education.
  • A quarterly newsletter for members to network ideas, articles, and inspirations.
  • An annual meeting in which to meet, organize, and discuss association business.
  • An annual conference for professionals and families to hear experts in genetics, neurology, psychology, and education.
  • An opportunity for professionals working with individuals affected by Sotos Syndrome to collect data for research and to meet colleagues.
Financial

$35.00 annual fee is due by the first of January.

Services
Craniofacial Disorders
Genetic Disorders
Parent to Parent/Matching
Rare Disorders
Spanish speaking community/materials
Counties Serviced
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As a matter of policy, About Special Kids does not specifically endorse any of the resources contained on our website or in our information packets. Resources are supplied for information purposes only and ASK recommends that families explore all options for assistance before making an informed choice.