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 with no clinical test available. 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 and its associated anomalies.
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.
Noonan Syndrome Support Group Medical Advisory Staff
***Under Construction***
[Top]
Wanda Robinson
[Top]
Contributions iGive Website Please support TNSSG, at no cost to you, through a new
website called iGive.
With just a few moments a day, you browse the iGive page, and money from advertisers on it
goes to help TNSSG. Eyegive also has an online store where a percentage of the purchase
price supports TNSSG. The typical iGive member can raise $10-$100 per year. To register
(which only takes a few minutes and already raises $2), click here. ________________________________ To donate through Network for Good, click on the icon below. [Top]
The Noonan Syndrome Support Group, Inc. and any associated parties
will not be held responsible for any actions readers take based on their interpretation of
published or disseminated material. Please review medical treatment and decisions with
your physician.
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
(Communication service is funded by the fund raising efforts
of the Minnesota chapter of
The Noonan Syndrome Support Group, Inc.)
info@noonansyndrome.org
