The mission of the NORSE Institute is to increase awareness of NORSE, be a resource for families, clinicians, and researchers - visit https://xitter.cf/t.co/W0tK1pyN8N
United States
Joined June 2016
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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)
NORSE Institute retweeted
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.
Join us for the annual NORSE/FIRES family conference and scientific/medical symposium! June 6 & 7 10AM-12PM ET. Register at: yale.zoom.us/meeting/registe…
Join us for the annual NORSE/FIRES family conference and scientific/medical symposium! June 6 & 7 10AM-12PM ET. Register at: yale.zoom.us/meeting/registe…
NORSE Institute retweeted
I am really pleased to share our last paper published in Annals of Neurology.
#cytokines, #NORSE, #outcome
doi.org/10.1002/ana.26627
@DrHirschEEG @Sorbonne_Univ_ @NeurosciencesSU @InstitutCerveau
@NORSE_Institute
#Epilepsie : des #scientifiques cherchent à mettre en lumière les mécanismes physiopathologiques qui sous-tendent les #crises, pour améliorer la prise en charge des patients.
🤝@InstitutCerveau @Yale
institutducerveau-icm.org/fr…
NORSE Institute retweeted
For #NORSE & #FIRES patients, please find clinical and family resources at norseinstitute.org 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!
NORSE Institute retweeted
Surviving status epilepticus: The patient and family perspective @NORSE_Institute epilepsybehavior.com/article…
NORSE Institute retweeted
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
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!
NORSE Institute retweeted
The big questions are up for debate. Great discussion by Ronnie Wickstrom and others at @NORSE_Institute roundtable at #AES2022 @AmEpilepsySoc
NORSE Institute retweeted
Looking forward to our SIG | Critical Care Epilepsy: Status Epilepticus Management — Beyond Anti-seizure Medications & Anesthetics
eppro01.ativ.me/appinfo.php?… #AES2022
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.
Contact us if you are a health professional looking to join virtually! norseinstitute.org/contact
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: norseinstitute.org/contact for info
NORSE Institute retweeted
The Clinical Analysis of New‐Onset Status Epilepticus onlinelibrary.wiley.com/doi/…
NORSE Institute retweeted
Long Term outcomes after NORSE: Treatment with Vagus Nerve Stimulation onlinelibrary.wiley.com/doi/…
#openaccess #epilepsy #Statusepilepticus #autoimmune #encephalitis #VNS #NORSE @IlaeWeb @WileyNeuro @yesILAE @EpilepsiaOpen
NORSE Institute retweeted
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
A Loyola University volleyball player describes surviving the rare neurological disorder FIRES. abc7chicago.com/fires-rare-d…
NORSE Institute retweeted
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
"I'm literally one in a million." Diagnosed with a rare #epilepsy condition, Grace Hinchman is back on the #volleyball court for @RamblersWVB, thanks to her medical team @NorthwesternMed @NMNeurology.
PRESS RELEASE: bit.ly/3x2VoPU.
@AyushMD @vanhaerents @LoyolaRamblers
NORSE Institute retweeted
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 bit.ly/webinar26aug2022. @yesILAE #epilepsyeducation
NORSE Institute retweeted
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
🖇️ rdcu.be/cTW4Z
NORSE Institute retweeted
International consensus recommendations for management of New Onset Refractory Status Epilepticus (#NORSE) including Febrile Infection‐Related Epilepsy Syndrome (#FIRES): Summary and Clinical Tools onlinelibrary.wiley.com/doi/…
#epilepsy #Antiseizuremedication @IlaeWeb @WileyNeuro
NORSE Institute retweeted
(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. bit.ly/3JV0L8Y
