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Welcome to our World

Want to talk to doctors who know Noonan syndrome? Want to meet people affected by Noonan syndrome? Here is your opportunity

• TNSSG Family meeting in Mont-Tremblant, Qc, Canada, August 6th and 7th, 2010: RSVP-Will you attend?

Please, RSVP, take our Survey 2010 Canada Family Meeting

• TNSSG will again collaborate with the CFC and Costello family groups to combine our resources and host the July 2011 Family meeting, in conjunction with a scientific meeting,  to be held in Chicago, IL. We are in the preliminary planning stages for this event and need your input.  Here is a survey that we need you to fill out if you are, planning or considering attending the TNSSG Family meeting. :

Please, RSVP, take our survey July 2011, Chicago, IL.

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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 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.

Restarted 10-13-2009