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