jaffe campanacci - non ossifying osteofibrous dysplasia - tibia bone tumor children
 

Hi has anyone been diagnosed with Jaffe campanacci Syndrome with non ossifying osteofibrous dysplasia (tumor) in the left tibia bone? My daughter has been diagnosed with this and wanted to find a bit more about this complicated bone disease - particularly in children. Any stories/treatment/or information related to this would be greatly appreciated.