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Welcome to our World

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A clinical test is available, in some cases.  As of 8-2009, Several genes have been identified [ PTPN11 - 40% ] [KRAS - < 5%] [SOS1 - 11%][RAF1-4.7]and[BRAF-<5%]. 

This is a genetic condition that can affect the heart, growth, blood clotting, mental and physical development. Affected individuals may have behavior problems, learning difficulties

and many other anomalies. Noonan Syndrome is one of the most common of those conditions associated with congenital heart abnormality.

Still its exact cause remains unknown..... 

       

The Noonan Syndrome Support Group, Inc. is committed to the most accurate and current understanding of Noonan syndrome.

Our Mission

The Noonan Syndrome Support Group, Inc. is committed to providing support, current information, and understanding to those affected by Noonan syndrome.

It is also our goal to raise the awareness of, and educate the medical community as to the complex nature of this syndrome and how it affects the lives of those who have it.

With the help of our members from around the world we hope to be able to provide further research into the areas of symptoms, diagnosis, treatment and outcomes related to Noonan syndrome.

We recognize the importance of linking patients, specialists, and researchers from around the world to improve our understanding of this disease and are committed to helping establish connection across the globe

What does the Noonan Syndrome Support Group, Inc. do?

The Group is intended for people whose lives are touched by Noonan Syndrome, and want to exchange experiences and hopes regarding our children (or us)

Associated professionals are also welcome.

  • We offer support, networking and information.

  • We aim to create greater awareness amongst professionals and the public at large.

  • We support research into the many aspects of this complex condition.

Community

We have several ways to interact with people affected by Noonan syndrome.   Take a look and join us...

  • Community section (similar to popular networking sites) where members can meet other members, discuss important topics and share in all of our amazing stories. Request Membership

Members  Log In
Questions Contact Martha G.

  • Be a part of our Group on FaceBook

 The Noonan Syndrome Support Group, Inc. (TNSSG)

  • Visit The Noonan Syndrome Support Group, Inc. site on Facebook, REMEMBER to CLICK Like IT

 

  • Talk to Others via Email:

We operate a list service (discussion forum). If you would like to subscribe, and be a part of our family, send an e-mail to listserv@home.ease.lsoft.com with only the following command in the message body:subscribe noonan-syndrome

 

 

2007 Family Meeting

 You Can Give      

                      

"No act of kindness, no matter how small, is ever wasted"

- AESOP

 

 

The Noonan Syndrome Support Group, Inc.,
P.O. Box 145
Upperco, MD  21155, USA
1-888-686-2224 within the USA
or 410-374-5245
info@noonansyndrome.org 

Thank you for your kindness and generous support!

* The Noonan Syndrome Support Group, Inc. is a 501 (c)(3) tax exempt, non-profit organization. Contributions are tax-deductible to the extent allowed by law.
For more information, please call (410) 374-5245 or 888-686-2224

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Restarted 10-13-2009