Hello CONDBA families!
I am new to Rareshare. Our daughter was diagnosed with CONDBA 2 years ago and like the rest of you I'm sure, I've struggled to find any real information about this disease except for the one medical study that was conducted a while ago. I'd love to know when your children were diagnosed (what age) and if their symptoms are similar to our daughter's. It would be nice to not feel so alone while trying to navigate a disease that is so rare and has so little information available. Thanks so much!