The mission of the NORSE Institute is to increase awareness of NORSE, be a resource for families, clinicians, and researchers - visit norseinstitute.org
Joined June 2016
- Tweets 57
- Following 87
- Followers 127
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Pinned Tweet
30 Apr 2022
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)
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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.
3 Jun 2023
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…
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3 Jun 2023
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…
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NORSE Institute retweeted
3 Apr 2023
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…
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NORSE Institute retweeted
24 Jan 2023
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!
24 Jan 2023
NORSE/FIRES Delphi panel:
⏰ Methylprednisolone within 72 hours
🚫 Current evidence doesn’t support CBD
🥶 Hypothermia is NOT first line
🤌🏻 Rational polytherapy to guide AED choice
#PharmICU #SCCM2023
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NORSE Institute retweeted
19 Jan 2023
Surviving status epilepticus: The patient and family perspective @NORSE_Institute epilepsybehavior.com/article…
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NORSE Institute retweeted
21 Dec 2022
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
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4 Dec 2022
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!
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NORSE Institute retweeted
3 Dec 2022
The big questions are up for debate. Great discussion by Ronnie Wickstrom and others at @NORSE_Institute roundtable at #AES2022 @AmEpilepsySoc
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NORSE Institute retweeted
2 Dec 2022
Looking forward to our SIG | Critical Care Epilepsy: Status Epilepticus Management — Beyond Anti-seizure Medications & Anesthetics
eppro01.ativ.me/appinfo.php?… #AES2022
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2 Dec 2022
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.
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2 Dec 2022
Contact us if you are a health professional looking to join virtually! norseinstitute.org/contact
27 Nov 2022
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
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NORSE Institute retweeted
10 Oct 2022
The Clinical Analysis of New‐Onset Status Epilepticus onlinelibrary.wiley.com/doi/…
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NORSE Institute retweeted
2 Oct 2022
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
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NORSE Institute retweeted
21 Sep 2022
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
21 Sep 2022
A Loyola University volleyball player describes surviving the rare neurological disorder FIRES. abc7chicago.com/fires-rare-d…
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NORSE Institute retweeted
12 Sep 2022
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
7 Sep 2022
"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
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NORSE Institute retweeted
25 Aug 2022
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
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NORSE Institute retweeted
19 Aug 2022
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
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NORSE Institute retweeted
11 Aug 2022
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
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NORSE Institute retweeted
13 Aug 2022
(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
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