the Apert listserv



 

 


 

For many years, we ran a very unique listserv (email list) for Apert syndrome.  We also had a Forum where members could post photos and thread messages.  Time and technology march on, and it became very difficult to keep the listserv operating - hosts began to discontinue the service due to other forms of communication becoming popular.  Social media has moved in and taken over in a big way, and alas, the Apert Listserv and Forum have been retired.  But fear not!  All of the same wonderful families are waiting for you on Facebook in our very exclusive closed group, Apert USA.  (Note - you must be logged into Facebook for these links to work).  The Facebook format works very well - our thoughts and photos stay around forever and are searchable - many of the headaches involved in email are eliminated.

To join, send a friend request to Don Sears or Cathie Sears and if we don't already know you, either an email or facebook message telling us who you are.  You must either have Apert, Pfeiffer, or Crouzon syndrome or be the immediate caretaker of someone with these syndromes in order to join this group.  There are other groups available for general craniosynostosis and similar syndromes.

We look forward to seeing you there!

 

 

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