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Hello and greetings from the Noonan Syndrome Support Group, Inc. Our first TNSSG, Inc. newsletter was distributed in September of 1996. We have come a long way since that time and our membership has grown by leaps and bounds. The recent 2003 Winter Edition of our newsletter, The Noonan Connection, was sent to over 1500 people. We now have an abridged edition that can be found on our web site at: www.noonansyndrome.org
The Noonan Syndrome Support Group, Inc. was founded in June of 1996. We offer support to families and professionals whose lives have been touched by Noonan Syndrome. We also offer a "Information Packet" that contains more than 140 pages of information relative to the various aspects of Noonan Syndrome. There is no charge for this packet.
We are a networking group. If you need to talk to someone, please give me a call (during the day or early evening (EST)), or feel free to call anyone on our contact list. We would be happy to talk with you. We also operate a list serv via electronic mail and we encourage you to subscribe. There is no fee for this service, and you get to exchange information with others in the group whose lives are affected by Noonan Syndrome. To subscribe to our list service, send an e-mail to the following: firstname.lastname@example.org with the command: SUBSCRIBE NOONAN-SYNDROME
It's hard to express the feeling I had the first time I talked to another parent with a Noonan Syndrome child. It was like coming home. Over the past ten years I had come to believe my child was the only one with Noonan Syndrome. This is not the case and today I can truly say I have made some wonderful new friends from all over the world.
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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.