ROHHAD Syndrome is an extremely rare life threatening and life limiting disease that presents in children after the age of 1 years old. The children it affects are otherwise healthy prior to the onset of symptoms and for sufferers, the diagnosis is considered terminal.
The term ROHHAD is an acronym for Rapid Onset Obesity with Hypothalamic Dysfunction, Hypoventilation and Autonomic Nervous System Dysregulation. It was first discovered in 1965, and since that time at least 100 cases have been documented. Statistically the children affected are 1 in 73 million.
ROHHAD is a cruel and complex syndrome that severely impacts quality of life. Every organ and system within the body of those affected begins to malfunction and some eventually fail, meaning that a large proportion of their lives is spent in hospital undergoing invasive investigations, treatments and surgeries. Those diagnosed with ROHHAD face a daily fight for survival.
Research can and will result in improved quality of life for sufferers and will also help medical professionals to diagnose those affected. We hope it will eventually lead to finding a cure. As a result, those suffering from ROHHAD need YOUR HELP NOW.
The ROHHAD Association is a global charity and their mission is to:
Fund and promote research that will lead to a new understanding of and treatments for ROHHAD, one day leading to a cure.
Offer support for people with ROHHAD, and their families.
Campaign and raise awareness so that the needs of people with ROHHAD and all those affected by the disease are recognised within the wider society.
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