My family have have this syndrome as a diagnosis. I cannot find any support groups or places to read about it other than the limited amount on wrongdiagnosis.com. The diagnosis given to us by the geneticist has been made slightly harder by the fact that all my children are female, and do not therefore have hypospadius, but he is certain that is what they have but feels his diagnosis will be challenged, due to no male child having had hypospadius.
Does anyone have anmymore information on this very rare syndrome.
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