Online Community

The Chromsome 9pminus Network’s online community of fellow 9pminus parents and caregivers offers a tremendous amount of information and support. The Network offers a private Yahoo eGroup to Network members only and an open Facebook group for members, extended family, friends, etc. Both forms of information are vastly helpful to enrolled Network families–but in different ways. Below are a few tips to ensure a smooth relay of information for each aspect of our Online Community.

9p-minus Yahoo eGroup:

The Chromosome 9pminus Network maintains a private, by-invite-only eGroup which serves as the principle source 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 group:

The “Chromosome 9pminus Network” Facebook group is an open, request-membership group. Members of the Chromosome 9pminus Network may join along with extended members of their family, friends, therapists, etc. It offers the opportunity for 9pminus information to be shared in an open forum instead of the private forum available in the Network’s members-only eGroup. Photos can be viewed or uploaded by members of the group which are encouraged. Members of the Chromosome 9pminus Network Facebook page should note the Facebook group is only a small part of our Network–being a member of the Facebook page does not mean you are automatically enrolled in the Network.

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