|
|
|
"No act of kindness, no matter how small, is ever wasted"
You can join the TNSSG group or our cause on FACEBOOK
|
Welcome to our World
4-9-08 What's Happening Now (Group News and Events) PLUS:
Welcome to the Noonan Support Group (TNSSG). Noonan Syndrome is a condition which affects both children and adults. It is often associated with congenital heart disease and short stature.
Often called a "hidden" condition, the children affected may have no obvious casual signs to the onlooker, but the problems may be many and complex. A clinical test is available, in some cases. As of 12-03-06, 3 genes have been identified [ PTPN11 - 50% ] [KRAS - < 5%] and [SOS1 - 10%] . 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.
Learn about 10-13-2006 Symptoms That Occur in Both Noonan Syndrome (NS) and Arnold Chiari Malformation Type 1 TALK TO PEOPLE WHO ARE MOST AFFECTED BY NOONAN SYNDROMEWe 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
Wanda Robinson,
Restarted 3-11-08
|