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Problem On average it will take up to seven years to be diagnosed with an orphan disease. During this time, patients will have seen several doctors, received a large number of changing diagnoses, consulted the internet various times and will have undergone many forms of treatment. Since the majority of rare disorders affect more than one organ system, it is almost impossible for physicians not specialising in rare disorders or working in this area on a daily basis to diagnose an orphan disease.

First German Academy for Further Medical Training on Rare Diseases (FAKSE, http://www.fakse.info)