Sotos Syndrome Support Association
431568496
Wheaton, IL 60189 USA
sotossyndrome.org
Sotos Syndrome Support Association
The Sotos Syndrome Support Association (SSSA) is a nonprofit organization established in 1988 to support individuals affected by Sotos syndrome, a rare genetic disorder characterized by excessive growth during early childhood. The organization is incorporated in the state of Missouri and operates as a 501(c)(3), with donations being tax-deductible.
Mission and Activities
The SSSA's primary mission is to create a social support environment for families and professionals dealing with Sotos syndrome. This involves providing educational resources, facilitating networking opportunities, and offering emotional support. The organization achieves these goals through several initiatives:
- Annual Conference: Each year, the SSSA hosts a conference that brings together families and professionals to share experiences and learn from experts in genetics, neurology, psychology, and education.
- Education and Awareness: The SSSA educates families and healthcare providers about Sotos syndrome, promoting a better understanding of the condition.
- Newsletter and Communications: Members receive a regular newsletter that includes personal stories, tips, and updates on conferences and seminars.
- Research Opportunities: Professionals can collect data for research and network with colleagues through the SSSA.
Financial Overview
As a nonprofit organization, the SSSA relies on contributions, program services, and investment income. Revenue sources include member dues, donations, and income from educational materials and events. The organization maintains a positive financial position with minimal liabilities.
Affiliations
The SSSA is a member of the National Organization of Rare Disorders (NORD) and affiliated with the Alliance of Genetic Support Groups, enhancing its reach and collaboration in the field of rare genetic disorders.
Governance
The organization is run by volunteers, including family members and friends of individuals affected by Sotos syndrome. This personal connection helps tailor the support services to better meet the needs of those impacted by the condition.
Impact
By providing a platform for support, education, and research, the SSSA plays a crucial role in improving the quality of life for individuals with Sotos syndrome and their families.
[1] https://www.sotossyndrome.org/about-us/ [2] https://en.wikipedia.org/wiki/Sotos_syndrome [3] https://www.inclusivechildcare.org/resource-library/website/sotos-syndrome-support-association [4] https://www.sotossyndrome.org [5] https://projects.propublica.org/nonprofits/organizations/431568496
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About the organization
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Sotos Syndrome Support Association 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 and the world. Meet Our Organization The volunteers that created the SSSA and continue to run the organization have always been family and friends of individuals effected by Sotos or similar syndromes. To further its mission the SSSA provides a number of program services supported by member dues and individuals donations. Our Mission is to provide 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.
Specifically Named Diseases
