Please Note: Since setting up this website, we have become pretty overwhelmed ourselves with hospital schedules and this website has been neglected. Hopefully the  links and data we have posted will help until we get a chance to finish adding the info we have been collecting. 2/24/09.

As parents of a child with ROHHAD, we decided to set up this website as a way to share our findings and experience with other parents trying fruitlessly to find info on the web as well as bring more awareness to the general medical community.

What is ROHHAD? Rapid-Onset Obesity With Hypothalamic Dysfunction, Hypoventilation, and Autonomic Dysregulation Presenting in Childhood.

In layman's terms, ROHHAD is an extremely rare and very serious syndrome found in children made up of several issues. The most obvious of which is unexplainable weight gain, and the most serious being the brain's inability to continue telling the body to breath. 2000 cases of a given syndrome or disease makes it "official" and labeled as "rare". We currently know of 27 documented cases of ROHHAD. Because of this, the knowledge of treatment is unknown and most organizations haven't even heard of it. 

This site is not intended to provide medical advise as we are not doctors. We encourage you to use any information or references here and review with your doctor. We hope it helps!