Well this would depend on who or what side of the globe you are talking about. I have been doing hours and hours of research this weekend. I've had 2 lap tops in front of me almost all weekend! I have a lot of stuff to share and I have made comparison spreadsheets, charts and I have my very own dictionary of medical terms often used with discussing ROHHAD.
What is ROHHAD? Rapid-Onset Obesity With Hypothalamic Dysfunction, Hypoventilation, and Autonomic Dysregulation Presenting in Childhood
What is ROHHADNET? Rapid-Onset Obesity With Hypothalamic Dysfunction, Hypoventilation, Autonomic Dysregulation and Neural Tumor Presenting in Childhood
It seems as though, from my readings, that Europe is proposing to add "NET" on the end for those cases who have Neural Tumors. If this were made official - this is the syndrome Haven would be officially documented as having. USA is rejecting the addition of "NET" as they believe the acronym is already long enough and the neural tumor is almost always assumed.
I will share a comparison of Haven vs. 15 ROHHAD patients from Chicago. It shows what symptoms they have vs what Haven has. It also compares the age of these 15 when symptoms occurred and as we know I have been trying to figure out what has been going on with Haven since age 2 years and 4 months.
PS: It's about to get techy!