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  and Lawrence Hirsch, MD, via Contact page.  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 and Nicolas Gaspard, MD, Ph.D via Contact page.  Families see further explanation in Families section.

The NORSE Institute, in partnership with the National Organization of Rare Disorders (NORD) is issuing a request for proposals for grants up to $100,000 for research in NORSE and FIRES.  Link to RFP here.

New evidence that time to treatment in refractory status epilepticus is vital. 
Association of Time to Treatment With Short-term Outcomes for Pediatric Patients With Refractory Convulsive Status Epilepticus. Gaínza-Lein M, Sánchez Fernández I, Loddenkemper T; Pediatric Status Epilepticus Research Group. JAMA Neurol. 2018 Apr 1;75(4):410-418.

There is no established, effective treatment for NORSE