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, hyertelorism, 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.
How Can We Help?
The Noonan Syndrome Foundation is the leading 501(c)(3) non-profit organization for Noonan Syndrome. Our mission is focused on raising awareness, educating the public and healthcare providers,building community through social media and roviding informational support servies to the community. We are also centered on finding life-saving treatments for people with NS by supporting research initiatives. Please contact us via our website, email or Facebook.
www.teamnoonan.org info@teamnoonan.org Facebook: Noonan Syndrome Foundation
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