12 - Connecting with Others

 

Dear Family,

We are excited to announce that we have updated the “Connect with Other Simons VIP Families” section on www.simonsvipconnect.org. On this redesigned page, you will see a table of genetic changes represented by the members of the Simons VIP Connect community. By selecting a genetic change from that list, you can see all Simons VIP families who have that particular genetic change and are interested in connecting with others. For each family listed in the search results, you will see the family’s location, the age of the individual in the family with the genetic change, and the account holder’s username – Then, just click the account holder’s username to start a private message directly to that family!

NOTE: Initial messages are sent through the online system, so no personal information is shared (besides what may be included in your username). Once both families agree to connect, they can exchange direct contact information.


What does this mean for me?

This means that you can now see a list of all the other families in the Simons VIP community who have the same genetic change as your family and are interested in connecting! You can see if these families live near you and you can quickly and easily send them a private message to share your experiences with each other! It also means that you might be receiving one of these messages from someone else in the community!


How do I get to this new page?

First, login at www.simonsvipconnect.org. Then, on the menu bar, go to the “Members” tab and click on “Connect with Other Simons VIP Families”.


*Why is my family not appearing when I select our genetic change?

If you do not see your family’s information listed for the genetic change that your family has, it means that you haven’t told us if it is okay for other community members to contact you.

In order to let us know, go to your profile “My Profile” page and scroll down to the “Survey & Account Details” section:

·         If you see a survey assigned to your profile called “Community Questionnaire”, please complete this one-question survey to let us know if you would like to appear in the search results.

·         If you do not see this survey (or to change your preference at any time), update your response to the question, “Allow others to contact you” on your “Account Info” tab.


Please contact the study coordinators if you have any questions or need any assistance with this updated feature!,

All the best,
The Simons VIP Study Team

 

    

 

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