Malan overgrowth syndrome

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Synonyms: Sotos syndrome 2

A rare multisystemic genetic disorder characterized by a characteristic facial features with macrocephaly overgrowth in infancy intellectual disability and behavioral problems including anxieties and aggressiveness.

Data from Orphanet are used to provide information on a disease's name, synonym(s), and overview. Reference: Access aggregated data from Orphanet at Orphadata. Orphadata: Free access data from Orphanet. © INSERM 1999. Available on http://www.orphadata.org. Data version July 2024

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Malan overgrowth syndrome?

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Advocacy Organizations

Malan Syndrome Foundation

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. We aim to 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.

Oklahoma Rare

Oklahoma Rare is a collaborative community started by 2 parents of children diagnosed with rare diseases (both experienced advocates with history of working in the developmental disability and rare disease communities) created to share resources, advocacy opportunities and connection within the Oklahoma Rare Disease community.

Project CASK

VISION Project CASK believes in a world free of the life limitations and debilitating effects of CASK gene disorders. ​MISSION To accelerate breakthroughs in research to develop treatments and a cure for CASK gene disorders. ​VALUES Collaboration. Transparency. Urgency.

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Clinical Trials

For a list of clinical trials in this disease area, please click here.