About ROHHAD International Consortium

ROHHAD IC was founded in 2020 as a collaboration between clinicians, scientists, charities and families interested in advancing knowledge and treatment of ROHHAD. Currently, there are over 30 members of the ROHHAD IC representing dozens of institutions from countries around the world. The consortium meets regularly to review ROHHAD relevant research and cases, and to strategize next steps in ROHHAD research. In 2022, the ROHHAD IC will be hosting their first rare disease meeting designed to bring the broader scientific community together to discuss ROHHAD and ROHHAD-relevant research. Further information on ongoing ROHHAD IC research can be found here. Details about the ROHHAD IC scientific meeting can be found here, and you can register for participation at this site.

Our Mission

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.