SSSA 2012
Conference

July 20 - 22

About SSSA

Organized in 1988, the Sotos syndrome Support Association (SSSA) is made up of families, physicians, genetic counselors, and health care agencies throughout the United States. The SSSA is a non-profit organization which is incorporated in the state of Missouri.

The SSSA is an Associate Member of the National Organization of Rare Disorders (NORD) and is a member of the Alliance of Genetic Support Groups.

The SSSA's annual conference is held each summer in a different geographic region. This conference is an excellent venue for families to interact as well as obtain a wealth of information from a variety of professionals. Recent conferences have been held in Omaha, NE and Anaheim, CA. The 2008 annual conference was recently held July 25-27 in Niagara Falls, Ontario. There were 86 families in attendance, totalling over 300 attendees. A resounding success! The 2009 annual conference is planned for Salt Lake City, Utah. You can expect another great conference with our specialists and many other guest lecturers. We have committees researching future conference sites for our 2010 and 2011 annual conferences---most likely in the southern United States. Please contact our Conference Liaison for more information.

Purpose of the Sotos Syndrome Support Association

• 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.
• 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.