I just found out there's another family in RI with a diagnosis of my daughter's rare condition, Wiedemann Steiner Syndrome. NOW TO FIND THEM......
They aren't part of the WSS Facebook support group, I know bc I was one if the original 4 members. There's 150+ members now. The family registered with Coordination of Rare Diseases at Sanford (CoRDS) and when the Wiedemann Steiner Foundation started summarizing data it said 2 RI families. Unfortunately CoRDs does not collect identifying data......
I'm trying here because YOU NEVER KNOW