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How many cases of CDG are known worldwide?

Answer

We have no exact figures but the published cases figure around 600 for the N-glycosylation disorders. There are many more patients reported with a known O-glycosylation disorder (multiple exostoses, Walker-Warburg syndrome, muscle-eye brain disease, etc) but again it is very difficult to obtain exact figures. All together (known and unknown CDG) I guess that an incidence of 1 in 5000 births may be a minimum estimate. Responder: - Jaak Jaeken, MD, Ph.D. 07/27/11

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CDG Family Network FAQ's, Updated by Jaak Jaeken, MD, Ph.D. 07/27/11 

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