09/06/2026
Sotos syndrome is a rare genetic condition typically characterized by distinctive
facial features, physical overgrowth during childhood, and learning or
developmental delays.
Did you know? About 95% of cases occur sporadically due to a brand-new genetic
mutation (NSD1 gene) and are not inherited from a parent.
children tend to grow very quickly, often
making them significantly taller than their peers.
• DISTINCTIVE FACIAL FEATURES: Commonly includes a long, narrow face, a high
forehead, flushed cheeks, and a small, pointed chin.
• DEVELOPMENTAL MILESTONES: Most individuals experience speech delays, delayed
motor skills, or learning disabilities.
• CO-OCCURRING CONDITIONS: Can sometimes include weak muscle tone (hypotonia), scoliosis, or neurodevelopmental differences like ADHD and Autism.
Sotos syndrome is not life-threatening, and individuals can live a completely
normal life expectancy. No two people present exactly the same way.
"A diagnosis can help us understand a person’s needs, but it should never
define our expectations of what they are capable of achieving."
September 6th is Global Sotos Syndrome Awareness Day!
Spread understanding. Foster inclusion. Support the community.