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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).


You will notice we have chosen sunflowers to be a recurrent theme for our foundation. Sunflowers are tall and resemble the sun, which is associated with warmth, positivity, hope and happiness. They are hardy with a robust stem, capable of enduring difficult conditions.  Like the sunflower, those affected by Malan syndrome are tall, resilient and bright. 

The sunflower is one of the most recognizable flowers in the world. We hope by identifying with the sunflower and continuing to raise awareness, Malan syndrome will become more recognizable to medical professionals and more children and adults will be able to obtain an accurate diagnosis.


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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