Online Groups (old format)


The Yahoo 22q13 Family Discussion List/22q13 Deletion E-Group on Yahoo Health Groups has been active for over 9 years averaging over 130 messages a month.  It is a great resource for communicating with other 22q13 families, provides the ability to search the extensive message archive and download documents stored in the file section.

To join, click the "22q13 Join" link below.  If you have a Yahoo account you will be prompted to login with your username and password before joining.  If you do not have a Yahoo account, you will be prompted to create one.

Once you have joined the Yahoo 22q13 Family Discussion List, you should receive a "Thank you for joining the 22q13 Deletion E-Group on Yahoo Health Groups." email.  We have posted the link to this message below in case for any reason you do not receive it.

Yahoo 22q13 Welcome Message


These Facebook sites have been created. If you have a Facebook account, feel free to join them and our online community.

The Official Facebook site of the Phelan-McDermid Syndrome Foundation

Family Site:


You can keep up with the latest news about the Phelan-McDermid Syndrome Foundation on Twitter. Follow us at

European Sites

One of our families in France has set up a site about 22q13 Deletion Syndrome/Phelan-McDermid Syndrome. You can read it in French and English or other languages as well.

A family in the Netherlands has set up a ring 22 / 22q13 Deletion Syndrome site.


Last Updated on Wednesday, 21 August 2013 11:05
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