How rare is PXE?

Estimates of the incidence of PXE range from 1 in 100,000 people to 1 in 25,000 people. However, the true incidence of PXE is not known in any population. It is possible that some individuals affected by PXE are not yet diagnosed (and may never be), particularly people with mild signs of PXE, or those whose signs are not typical.

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