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Malan syndrome was first identified in 2010 and linked to a change in the NFIX gene. Before Malan syndrome was discovered, many patients were clinically diagnosed as “Sotos-like” meaning they had characteristics of Sotos syndrome but did not have the NSD1 gene variant. We now know that Sotos syndrome and Malan syndrome are two distinct disorders.

The Malan Syndrome Foundation was founded by 4 mothers with the purpose of providing resources and improved care and treatments for affected families. The Foundation was established in New Jersey and was designated a tax-exempt public charity in the United States in September 2019 by the Internal Revenue Service under section 501(c)(3).


The mission of the Malan Syndrome Foundation is to improve the lives of individuals and families affected by Malan syndrome in the global community through support, outreach and research.

Provide a broad network of support to families affected by Malan syndrome and help advance access to a diagnosis

Promote knowledge development, awareness and sharing of information

Explore research pathways to treatments and cures, as well as enhance understanding of Malan syndrome and related disorders

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