ROHHAD International Consortium
Our Mission is to work strategically and collaboratively as clinicians, researchers, charities, and families by raising awareness, expediting diagnosis, optimizing care, and ultimately finding a cure for ROHHAD, a rare orphan syndrome.
What is ROHHAD?
ROHHAD is an acronym for rapid-onset obesity (RO) with hypothalamic dysregulation (H), hypoventilation (H), and autonomic dysregulation (AD). It is a rare, life-threatening syndrome that affects the autonomic nervous system and the endocrine system. The key features include dramatic weight gain over a 6-12-month period in the first 10 years of life, followed by hypothalamic dysfunction, dysregulation of the autonomic nervous system, and alveolar hypoventilation. Children with ROHHAD appear to have normal growth, development, and general health prior to onset of symptoms. The cause of ROHHAD is currently unknown. Treatment varies based on the signs and symptoms present in each person.
Our Research
With the generous support and fundraising by ROHHAD families and organizations such as ROHHAD Fight Inc and the ROHHAD Associations, ROHHAD research is advancing faster than ever before. Members of the ROHHAD IC from around the world are leading these efforts, including developing a ROHHAD Registry, studying the immune system’s role in ROHHAD, the genetics of ROHHAD, and more.
Online Conference - 26th Feb 2022
To celebrate Rare Disease Day 2022, the ROHHAD International Consortium will be holding its first annual online conference where we bring the ROHHAD community together for a series of talks, workshops, presentations and updates from ROHHAD researchers and families. Save the date! The conference is scheduled from 8:45am - 2pm CST/2:45pm-8pm GMT on Saturday, February 26th, 2022. Learn more and register for free at this link!
our GOAL:
to find a cure for ROHHAD Syndrome and
support those affected by it
