It seems like about every two weeks I find another ROHHAD family. This time there are 2 new ones. They found my site I created on facebook for ROHHAD Syndrome and I was able to check her web site.
CLICK HERE for Twin Cin-City -- her child is currently with Dr. Weese-Mayer
The other lady's name is Trina - from Newfoundland.
I don't know much about them - I have only recently found them. But it's great to finally have a place where all of us can connect!!!!