If you have happened upon my blog because you searched Cerebrocostomandibular Syndrome, please email me at email@example.com!! My daughter, Abby, has this syndrome. I love to meet other CCMS families and hopefully be an encouragement to you if you're new to this road.
Below is some of the more helpful information I have found related to CCMS.
A case study done on the oldest known survivor
University of Kansas website with a decent explanation of CCMS with some helpful resources.
Website explaining the VEPTR rib, an expandable titanium rib that is sometimes necessary for the rib gaps.
Dr. Campbell, the creator of the VEPTR rib. (As of the time of this posting, the rib surgery is only done in 7 hospitals worldwide.)
A study being done by Dr. Warman at Boston Children's on the cause of CCMS
Guest blog post I did on CCMS with some helpful links.
I also have several PDF files of medical case studies on other CCMS patients, but an unable to post them here. If you would like them, just email me and I will send them to you!