List Service Rules  

The Noonan Syndrome Support Group, Inc. operates a list service (discussion forum). If you would like to subscribe, and be a part of our family, send an e-mail to with only the following command in the message body:    subscribe noonan-syndrome

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

Our goal and purpose of this list is to offer support to one another. We consider all of the subscribers to be part of our family. You are welcome to just "listen" or encouraged to post to the list (if you have a thought on something, a question, an answer, or an introduction). We desire to exchange experiences and hopes regarding our children, families, friends, and ourselves. It is important to each one of us to give and receive information, emotional and mental support wherever we are able. Ultimately we want to spread the word. We are ONE voice that needs to be heard. As we learn let’s give not only to one another. Let’s find a way to get the information into the hands of those who haven’t yet heard whether they are a professional or the neighbor across the street. It is now that we will explain our guidelines to hopefully express those things that will help facilitate a healthy listserve for each one of us.

The below rules is based on the "Netiquette"  rules located at

If you have a personal problem with something posted feel free to contact Wanda at If you have general questions or comments regarding these rules, you may contact Wanda or Lacy at

A summary of our rules or housekeeping, and how they apply to TNSSG, are:

Remember we are human - Express yourself freely but remember that people of all ages and beliefs read these messages. Please refrain from using profanity and rudeness. Lets really try not to impose our personnel religious beliefs on others.

Adhere to the same standards of behavior online - Please do not suggest anything that is illegal or unethical.

Know where you are in cyberspace - This group includes people that are going through difficult times - please respect the feelings of others. It is difficult when reading a post to "hear" the mood and tone of voice. Again, please be careful.

Respect other people's time and bandwidth - Please do not send messages that are intended for only one person to go to the entire group. Also, consider the expense of connect time and storage when sending long messages. Specific suggestions include:

Make yourself look good online - Please take the time to compose your message in a way that is easy to read and understand.

Share expert knowledge - The strength of TNSSG is in its numbers. If you have knowledge to share, please do so - the others will appreciate your contributions.

Help keep flame wars under control - If you have already expressed your feelings, please do not perpetuate an argument.

Respect other people's privacy - The information provided by family members should stay within the family. Please do not use any of this information for any other purpose (e.g., "spam" e-mail).

Don't abuse your power - The system administrator will be respectful of others. However, those that repeatedly violate these rules will be removed from the TNSSG list service.

Be forgiving of other people's mistakes - Everyone was a "Newbie" once. Please be kind in pointing out the mistakes of others (preferably in a private message). If you are unsure about this, please don't hesitate to contact Wanda!

We do hope this is helpful! This document is fairly new to us and its purpose is to address some common errors not intentionally made by subscribers. Please read this carefully. We believe the tips and instructions will be of benefit to each of us in many ways. There are well over 100 members on the list! This is exciting, rewarding and challenging as well.

For further information on the list service or other TNSSG services (or to offer suggested revisions to these rules), please contact us.


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.