What is Noonan Syndrome?
Noonan Syndrome (NS) is a variably expressed, multi-system disorder with an estimated prevalence of 1 in 1,000 to 2,500 births. It is nicknamed the "Most Common Rare Syndrome You've Never Heard Of". People with NS may experience bleeding issues, congenital heart defects including hypertrophic cardiomyopathy and/or pulmonary valve stenosis, lymphatic abnormalities, small stature/growth issues, feeding and gastrointestinal issues, failure to thrive, hypertelorism, learning disorders, autism, unexplained chronic pain, connective tissue disorders, auto-immune disorders,chiari malformation, hypotonia, ptosis, skeletal malformations, laryngomalacia, tracheomalacia, opthamology issues, orthopaedic issues, oncology issues and much much more. Because of the variability in presentation and the need for multidisciplinary care, it is essential that the condition be identified and managed comprehensively.
For more information about Noonan Syndrome, please visit our webpage at www.teamnoonan.org.