I wanted to let you know about a website for patients and families experiencing New Onset Refractory Status Epilepticus (NORSE) called http://www.norseinstitute.org/. This is a privately funded organization that includes some value resources including an example of a diagnostic algorithm (might look familiar to those of you who’ve seen a similar one from a few years ago!) and patient resources including a Hospital Discharge Planning guide among other things. Please take a look! 

If by change you come across a NORSE patient – refractory SE without defined cause for at least 24 hours from admission – please let me know as we are proud participants in the NORSE registry and soon will be able to offer an experimental medication, IV ganaxolone, as part of the upcoming RAISE study (Marinus Pharmaceuticals, Inc).

Thank you!

Brandon Foreman, MD FACNS FNCS
Associate Professor of Neurology & Rehabilitation Medicine
Associate Professor of Neurosurgery
Associate Director for Neurocritical Care Research
University of Cincinnati
231 Albert Sabin Way
Cincinnati, OH 45267-0517
Mobile: 214-683-9863
Fax: 513-558-5673
Email: brandon.foreman@uc.edu