Scared mommy

My daughter has been and and out of the hospital twice in 5 weeks, the second time she was in the PICU. Her pediatrician has noticed some signs of a rare disease called PVOD. It's really rare and very hard to find resources on it. Does anyone know anything about it or know of any places I could look for info? Her pulmonologist appointment isn't until may 21 and I'm going crazy not knowing anything! Thanks in advance!