I am sorry it was so hard to get the proper diagnosis and for everything you and your daughter are going through.You could look Sheppard Pratt if you are in the DC area, since they have a clinic for eating disorders, and it mentions the dx as something they treat. It is in Baltimore, MD so not too far away. Not trying to endorse a specific place, and cannot speak to the treatment. I just heard of the hospital and wanted to pass along.

https://eatingdisorder.org/the-center/who-we-treat/

It seems like there does need to be more awareness of this ED from what you are saying. It appears to be a relatively new dx in the DSM 5 that expands on the previous diagnostic category of feeding disorder of infancy and early childhood from what I read. That could explain some of the reason it is not as widely known, in fact I had an eating disorder and hadn't heard of it until now officially, although I have heard of some of those symptoms before in individuals. Either way, you it seems like you are right there needs to be more awareness. Hope your daughter gets the help she needs.