When my daughter was diagnosed I did a bit of searching on the Internet to find more information. The info packet from the geneticist we see was somewhat limited and it was written in some pretty deep medical terminology. Trouble was there wasn't much out on the web.
But that was two years ago. Over the weekend, Jen, a new poster here on the site, gave me some great new links to recent information about 1p36 deletion syndrome. I've placed them under the links section on the right side of the page. I've you have questions about the specifics of this syndrome you'll find the answers there. The orphanet link takes you to a pdf about 1p36 deletions. It has some interesting info about studies that have been performed and what they've found about the missing pieces of 1p36. The Rare Diseases Sweden link is also a good one that covers some of the same information.
The best of the bunch is 1p36.com. It was set up by a mother who had a child diagnosed with a 1p36 deletion. She has collected a bunch of information, diagrams and pictures and put it all up on the site. I was very impressed. They also have a chat room, but I don't really know if it's ever active. The message board was disabled too, but the info there is very extensive.
In my spare time, I'm going to try and condense the best of all this information and get a wikipedia article together. Currently, they don't have one at all, so I'm hoping to add one that will help people. I'll post a link if it goes in.