Online Community

The Chromsome 9pminus Network’s online community of  9p Minus parents and caregivers offers a tremendous amount of information and support. The Network offers a private Yahoo eGroup to Network members only and 2 closed Facebook groups for members and extended family. These forms of information are vastly helpful to enrolled Network families–but in different ways. Below provides more detailed information about these 3 forms of communication.

9p-minus Yahoo eGroup:

The Chromosome 9pminus Network maintains a private, by-invite-only eGroup which serves as one of the sources of information for enrolled Network families. To gain access to the eGroup, an invitation is sent via email that requests the receiver to “Join this Group.” You are required to open a free Yahoo email account to join if you do not already have one. Once you have activated a Yahoo email account and have accepted the invitation to the 9p-minus eGroup, your email preferences can be adjusted within the Yahoo eGroup settings. Emails from the 9p-minus eGroup can be sent individually, in daily digest form, or web form (where no emails are sent to you but you have access to eGroup). You can also have emails sent to another email address other than your Yahoo email account which eliminates the need to log-in to Yahoo to read eGroup messages. Messages posted on the Yahoo eGroup are moderated by a parent volunteer. The moderator screens the posts for spam and appropriate message content. Members are asked to sign-off each email with their name, location, and name/age of their 9pminus individual. In addition to posting and receiving messages, the eGroup allows a family to view and post photos which are encouraged. The eGroup also offers a “Files” section with statistical information relating to 9p Deletion Syndrome as well as Network events, fundraisers, etc.

*If your email address changes, be sure to update your 9p-minus eGroup preferences to ensure receipt of eGroup messages.

Chromosome 9pminus Network Facebook groups:

The “Chromosome 9pminus Network” has 2 Facebook pages.  Both pages are closed, but one is a “Family Group” that is available by request to extended members of the 9p Minus child’s immediate family.  This Family Page offers the opportunity for sharing 9pminus information, but still in a confidential closed group forum. Photos can be viewed or uploaded by members of the group which is encouraged. The second page is completely closed to the parents and primary caregivers of a 9p Minus individual.   In order to be approved as a member of the Member Only Facebook page, you first have to become a member of the Network, by sending in the Membership form located on the Membership tab.