Here's a selection of information from patients & professionals to better understand CDG.
How many cases of CDG are known in the United States?
Answer
In the United States, my guess is that there are close to 175 cases. In the past 16 months, I have heard about 35 affected children that I didn’t know about before. Because there is no registry, this number is difficult to estimate. Many children are doing well and their physicians are taking excellent care of them, therefore, these families may not come to the attention of the organized CDG community.
Responder: - Donna Krasnewich M.D., Ph.D. 08/24/11
