Our Stories
Gallery of Stars 4-2-08
Q & A What Families Think
Dr. Allanson Q & A
Order: Information about NS
Giving
Research
More Information (Links)

                   

  You can join the TNSSG group or our cause on FACEBOOK

Welcome to our World

Add [Noonan Syndrome - Knowledge Is Power] to your iGoogle homepage today!

4-9-08 What's Happening Now (Group News and Events)

PLUS:

• 2008  The Minnesota Noonan Get Together

•           2008 FAMILY MEETING INFORMATION

• REGISTRATION

• WE NEED YOUR DONATIONS FOR OUR 2008 SILENT AUCTION

• DR. J. NOONAN AWARDED LIFETIME ACHIEVEMENT AWARD

• MEDSCAPE ARTICLE

• Presentation in the Netherlands by Dr. Amy Roberts

   

• 2007 FALL NOONAN CONNECTION

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. 

• It is believed that 1 in 1,000 to 1 in  2,500 children worldwide are born with this condition.

• Each day a child is born with the condition.

• It's possible that  people carry the gene yet are undiagnosed.

• Once affected, their is a 50/50 chance of passing the gene on to one or more of their children.

• It can also occur sporadically, presumably due to a new mutation.

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 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.

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 SYNDROME

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

(AOL subscribers also need to type a period "." in the subject line)

Wanda Robinson,
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

Restarted 3-11-08