NORSE Institute

The mission of the NORSE Institute is to increase awareness of NORSE, be a resource for families, clinicians, and researchers - visit

[NORSE Institute @NORSE_Institute]

NORSE: Clinical presentation wherein those without epilepsy have new onset refractory status epilepticus (long seizures or seizures without return to baseline not responsive to 1st or 2nd-line treatments) without clear metabolic/toxic/structural cause (DOI: 10.1111/epi.14016)

[neuroccm @neuroccm]

Please note and join this important conference. NORSE (new onset refractory status epilepticus) @NORSE_Institute is such an important condition in the ICU with a massive impact on patients and their loved ones. A lot more work to be done to understand, support, and work towards a cure.

[NORSE Institute @NORSE_Institute]

Join us for the annual NORSE/FIRES family conference and scientific/medical symposium! June 6 & 7 10AM-12PM ET. Register at: https://t.co/IXdvOvaFEz

[Hanin Aurélie @hanin_aurelie]

I am really pleased to share our last paper published in Annals of Neurology.
#cytokines, #NORSE, #outcome
https://t.co/C7vksXoN0r

@DrHirschEEG @Sorbonne_Univ_ @NeurosciencesSU @InstitutCerveau
@NORSE_Institute

[Eric S. Rosenthal @ericrosenthalmd]

For #NORSE & #FIRES patients, please find clinical and family resources at https://t.co/YPjrdjpxcH as well as the NORSE biorepository @YaleNeuroICU which will yield insights that our desperately patients need (no local IRB needed). @MGHNeuroICU we find these resources invaluable!

[Epilepsy & Behavior @EpilepsyBehavi1]

Surviving status epilepticus: The patient and family perspective @NORSE_Institute https://t.co/nfxoja5AT2

[Oskar Killinger Stiftung @OKS_stopSUDEP]

Thank you all. What you are doing to prevent epilepsy mortality is amazing. Meeting you in Nashville was a great inspiration. @DannyDidOrg @NORSE_Institute @Child_Neurology @CureEpilepsy @EpilepsyFdn

[NORSE Institute @NORSE_Institute]

Thank you to everyone who presented at and attended our NORSE Roundtable yesterday in person at #AES2022 and virtually! Great to hear new developments in research and discussions of next steps in the field!

[Hiba A. Haider MD @drhibahaider]

The big questions are up for debate. Great discussion by Ronnie Wickstrom and others at @NORSE_Institute roundtable at #AES2022 @AmEpilepsySoc

[Hiba A. Haider MD @drhibahaider]

Looking forward to our SIG | Critical Care Epilepsy: Status Epilepticus Management — Beyond Anti-seizure Medications & Anesthetics
https://t.co/J6GUEXRTJ6 #AES2022

[NORSE Institute @NORSE_Institute]

Contact us if you are a health professional looking to join virtually! https://t.co/LzZ9RsU9N1

[NORSE Institute @NORSE_Institute]

Looking forward to our NORSE Roundtable discussion tomorrow, Dec 3 from 12-2PM (central time) in person at #AES2022 and virtually. Discussions around research priorities for this field and review of recent data.

[NORSE Institute @NORSE_Institute]

Are you a healthcare professional interested in learning more about NORSE/FIRES? We have virtual spots available @ NORSE Roundtable - discussion of ongoing research and priorities in the field. Join us Sat Dec 3 @ 12–2pm (Central Time)!

Contact: https://t.co/LzZ9Rtcj19 for info

[Epilepsia Open @EpilepsiaOpen]

The Clinical Analysis of New‐Onset Status Epilepticus https://t.co/SPTzQCPdHl

[Epilepsia Open @EpilepsiaOpen]

Long Term outcomes after NORSE: Treatment with Vagus Nerve Stimulation https://t.co/uE6PzcJEa5

#openaccess #epilepsy #Statusepilepticus #autoimmune #encephalitis #VNS #NORSE @IlaeWeb @WileyNeuro @yesILAE @EpilepsiaOpen

[Stephen VanHaerents @vanhaerents]

So happy for Grace! It takes a village to care for patients with NORSE/FIRES. Special thanks to our @NMNeurology nurses, nutrition, and EEG techs and of course our amazing @NMNeurons residents,fellows, and @AyushMD! @NORSE_Institute @EpilepsyChicago @CureEpilepsy @EpilepsyFdn

[Stephen VanHaerents @vanhaerents]

I'm so happy for Grace and so honored to be part of her care team. She is a beacon of light for those suffering with New-onset refractory status epilepticus (NORSE) and Febrile Infection-Related Epilepsy Syndrome (FIRES). @NORSE_Institute @EpilepsyFdn @CureEpilepsy @NMNeurology

[International League Against Epilepsy @IlaeWeb]

Don't forget! The next #epilepsy educational webinar in English is tomorrow, Friday, 26 August at 17:00 UTC! The session with the #ILAE - Africa and Eastern Mediterranean regions will address status epilepticus. Register now at https://t.co/5WQqVa3HHt. @yesILAE #epilepsyeducation

[Intensive Care Medicine @yourICM]

Family/caregivers at #ICU bedside? Essential to pt's care... not merely “visitors”
⬇️ anxiety/#delirium + ⬆️ pts well-being
⬆️ communication & enhanced relationships with team
⬇️ anxiety/depression in family/caregivers
⬆️ psycho-health of HCWs
#FOAMcc
🖇️ https://t.co/FO1j51dESN

[Epilepsia @EpilepsiaJourn]

International consensus recommendations for management of New Onset Refractory Status Epilepticus (#NORSE) including Febrile Infection‐Related Epilepsy Syndrome (#FIRES): Summary and Clinical Tools https://t.co/KZ78Kz4OKO

#epilepsy #Antiseizuremedication @IlaeWeb @WileyNeuro

[Epileptic Disorders @EpiDisorders]

(1/2) Werbaneth et al. described a retrospective cohort of pts with new-onset refractory status epilepticus (NORSE) & evaluate the timing of immunotherapy and utility of the cryptogenic-NORSE (C-NORSE) score to identify cryptogenic cases. https://t.co/N4uAdFAqfh