Sotos Syndrome Support Association

General Organizational Information

Organization Name:

Year Established:

1988

Type of organization:

Condition(s)-specific organization

Mission Statement:

The Sotos Syndrome Support Association's mission is to add to your understanding of this syndrome and the people who are affected by it.

Professional/Medical Board?:

501(c)3 Status?:

Paid staff?:

Board of Directors?:

Serves the following conditions

Diseases:

Sotos syndrome

Organizational Contact Information

Title:

Secretary

First Name:

Lisa

Last Name:

Cruse

Address:

PO Box 4626

Wheaton, IL, 60189

Phone:

+1 630 682 8815

Toll Free Number:

+1 888 246 7772

Email:

info@sotossyndrome.org

Website Address:

http://www.sotossyndrome.org

Resources and Services Provided

Range of services include:

Referrals to local chapter or group

Professional counseling

Medical referrals

Referrals for non-medical services

Telephone helpline

Educational materials include:

Fact sheet(s)

Pamphlet(s)

Booklet(s)

Website

Newsletter

Video(s)/Movie(s)

Membership directory

Conferences/workshops for:

Researchers

Professionals