Advocating for All Affected by Noonan Syndrome
Raising Awareness and Hope
Noonan Syndrome (NS) affects approximately 1 in 1,000 to 2,500 globally, making it one of the most common single-gene disorders in the world, yet it remains largely unknown. At the Noonan Syndrome Foundation, we’re working to change that. Founded by parents seeking hope and understanding for their children, we are dedicated to advocating for everyone affected by NS, raising awareness, and fostering a supportive community that drives action. Together, we’re building a future where no one faces this journey alone.
What is Noonan Syndrome?
Noonan Syndrome can impact nearly every system in the body, causing heart defects, bleeding issues, developmental delays, and more. Despite its prevalence, research is still uncovering its complexities. The Noonan Syndrome Foundation has been a driving force behind progress — advocating for research that has advanced our knowledge of blood clotting disorders, genetic mutations, and best practices for care.
Together, We Can Do More
When your child is diagnosed with NS, the first thing you do is go looking for more information. We know firsthand how challenging it can be to find answers. We also know how invaluable it is to find community and learn from each other. That's why we hold a Family Conference every other year — providing families a chance to connect, share their experiences, and build a support system.
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We also stay connected online. Our private Facebook group is a safe place to ask questions, share stories, and find support from others who know what it's like to be affected by NS. If you're looking for community, you've come to the right place.
Attending the Noonan Syndrome Conference this past summer can only be described as life-changing. Meeting other kids with NS and families made a huge difference for us as we navigate this life-long condition. The connections we made with other families and doctors left a lasting impact on our family. We know we are not alone and we’re part of this very special community!
Asha, 11
Support Our Mission
Our work is only possible thanks to the generosity of our donors and sponsors. NSF is staffed entirely by dedicated volunteers. Our day-to-day activities, advocacy work, and our bi-annual conference is supported fully by individual donations, grants, and corporate sponsorships. Your donation helps us continue raising awareness for Noonan Syndrome and supporting all those affected by it. Every bit helps.
