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Did you know that Noonan syndrome may be as common as Down syndrome? Noonan syndrome (NS) may impact 7,000,000 people worldwide, and yet so few people (even doctors) have ever heard of it. This lack of awareness can and has put individuals with Noonan Syndrome in life-threatening situations.


Do you have a story of hope and courage to share? If so, we want to hear from you! Simply submit your story by using the form below or emailing us at Don’t forget to link to a photograph, or attach one in your email!


Join Team Noonan and create change! The Noonan Syndrome Foundation is run by a group of deeply committed volunteers called the Leadership Team.

We are always looking to add to our team! We need professionals from every field to donate their time and talent, especially in the areas of in marketing, public relations, fundraising/development, website management, graphic design, grant writing and health care.

For our current volunteers, please use the login below to track your volunteer hours. Thank you for volunteering your time! It is appreciated by all.


We need your help! Help us fundraise for important programs and services!

Eleanor Roosevelt once said, "Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has." No doubt about it, that is what we are going to do. We are going to raise the significant funding needed to find effective medical treatments, so that one-day our children, and others like them, do not have to suffer anymore.

Help us raise awareness, help us raise the funding that is needed for programs and services to help individuals with Noonan Syndrome! There are so many ways to get involved! You can host a small, medium or large scale fundraiser. This may be a lemonade stand, gala or $5 Jeans Day at your work/school! You can sign up for a race in your area and raise money for the Noonan Syndrome Foundation or make a donation and check with your company’s human resources department to see if they will “match” you gift! Need help? Contact us at

Contact Us

To contact us please fill out the following form and let us know how you'd like to be involved. You will receive a confirmation email and we'll get back to you as soon as possible with additional information.

You can also send us an email directly to





Partnerships and Alliances

Our partnerships and alliances with other foundations and companies is a very important part of our daily work. We would not be where we are today without the following important partners, alliances and sponsors!

Rare Disease Day Partner Amazon Smile