NORSE is a newly-established term for a long-recognized devastating condition.  This website provides integrated information for both professionals and families including diagnostic checklist, essential references, glossary of terms and family stories.  We welcome your comments and financial support.


Learn and Participate

New Onset Refractory Status Epilepsticus (NORSE): An Emerging Cause of Epilepsy Mortality will be the topic of discussion by Nick Abend, MD, Orrin Devinsky, MD, Marissa Kellogg, MD, MPH and Nora Wong at the upcoming Partners Against Mortality in Epilepsy (PAME) conference June 14-16, 2018. Further discussion of NORSE will take place in the Causes of Epilepsy Mortality Beyond SUDEP session with Lawrence Hirsch, MD.  Preliminary schedule is here.  This is a unique national conference that brings together physicians, patients and families.  Registration is open now.

A Prospective, observational study of NORSE patients is being done by member centers of the Critical Care EEG Monitoring Research Consortium.  Clinical data and biological samples (serum, CSF, tissue) are being collected. Study includes patients ages 5 and older.  Contact: Nicolas Gaspard, MD, PH.D (nicolas.gaspard@erasme.ulb.ac.be) and Lawrence Hirsch, MD, (lawrence.hirsch@yale.edu).  Families see further explanation in Families section.

A Family Registry of NORSE patients is under design that will accept patient information from families, patients and physicians outside of the CCEMRC.  Contact: Tenielle Gofton, MD (Teneille.Gofton@lhsc.on.ca) and Nicolas Gaspard, MD, PH.D (nicolas.gaspard@erasme.ulb.ac.be).  Families see further explanation in Families section.

There is no established, effective treatment for NORSE