Online Discussion Groups

KS&A currently provides seven free discussion lists.  Each list has a special focus according to age and/or developmental stage, and in some cases, for a particular X or Y chromosome variation.

These discussion groups were created in order to provide an opportunity for our members to exchange ideas, information, news, comments, concerns or whatever, related to 47XXY, Klinefelter syndrome, Trisomy X, 47XYY and variations of these conditions. 

Each of the groups provides a place to discuss issues, to give and receive support, and to post information concerning these conditions and about how to live better, fuller and more productive lives with them.  Because the lists are hosted on the Genetic Alliance’s private server rather than a commercial service such as Yahoo! or Google, there is no advertising associated with them.

What kinds of information can I expect to be discussed in these groups?

Expect to find lots of “real world” accounts about living with XXY, Klinefelter syndrome, Trisomy X, XYY and other conditions involving individuals with one or more extra X and/or Y chromosomes.  List members sometimes post reports about research, but discussing hard scientific information is not the only purpose of these lists.  We also exchange a lot of information about every aspect of living with X and Y chromosome variations.

Because each list represents an intimate network of support, expect to see lots of supportive messages.  KS&A made the decision to divide these lists into separate discussions in order to indicate the principle focus of topics for discussion not to eliminate anyone from participating in that discussion.  Hence, adults dealing with these conditions are welcome to participate in KS&A’s 0-3 discussions, provided that they understand the topic of discussion is to provide support for families dealing with children between the ages of 0 and 3 years old.  By the same token, the parents of a child who is only 1 or 2 years old is welcome to participate in the Adult list, provided that they understand that the topics of discussion there are to provide support for adults living with these conditions and members of their families.

Once you have subscribed to the list or lists that interest you, if you have a question, please post it.  No question is too big or too small.  You will probably receive answers from several people.  However, please remember that every individual is unique and you should always discuss treatment options and/or care recommendations with a qualified health care professional.

You will note that one of the KS&A lists is directed to XXY Adults.  This list is designed primarily for adults with 47XXY and Klinefelter syndrome, their families and others interested in discussing these conditions and variants thereof.  All subscribers are welcome to join this list provided that they understand and acknowledge that the subject matter allows for certain adult topics that may not be appropriate for all audiences.  Moreover, since the Adult list may focus on more mature subject matter, persons who elect to subscribe to it should anticipate and allow for greater latitude and autonomy of the topics addressed as well as the manner in which they are discussed.

Is there anything else I need to know before getting started?

Please read and follow the Discussion Group Rules to make these lists successful.  Subscribers not adhering to the Discussion Group Rules may be removed from the list.  Please read and save the instructions you receive when you first join the list.  These instructions include important information such as how to sign off the list and/or to suspend email messages when you plan to be on vacation.

KS&A does not charge dues or subscription fees of any kind.  Accordingly, all of these lists are supported by your financial contributions.  If you find the list to be of value, please consider making a contribution to KS&A that will help us to keep this and other services we offer in operation.

In order to subscribe to any or all of KS&A’s discussion lists, you must complete and submit a Subscription Form.  Following submission, you will be sent an email requesting confirmation.  This step is included in order to prevent other people from subscribing you to a list or attempting to find out details about your account without your express involvement and permission.