Melorheostosis Personal histories and a message board, alongside links to research. http://www.melorheostosis.com

Electronic Journal of Hand Surgery Short case study with photo and x-ray. http://www.leeds.ac.uk/handsurgery/EJHS/overgr.htm

NORD - Cerebrocostomandibular Syndrome Sample report, plus links to organisations. [Fee required for full report] http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Cerebrocostomandibular%20Syndrome