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Day 1 Scientific Symposium : Genetic update
Monday, April 29, 2024 10am – 12pm ET
Target Audience: Scientists and Clinicians
To register, click here

"Investigating the genetic underpinnings of NORSE/FIRES with whole genome sequencing"
Danielle deCampo, MD, PhD, (CHOP) and
Ingo Helbig MD, (CHOP)

And a brief presentation of a prospective study:

"Investigation of the Use of VNS in Treating NORSE"
PI: Laura Mantoan Ritter, MD, PhD with Richard Selway, MA MMedSci MB BChir BSc FRCS(neurosurg) (Charles Sykes Memorial Fund (King’s College Hospital Charity)

Day 2 NORSE/FIRES Family Conference : Research Updates, Transition of Care, Post-Intensive Care Syndrome
Wednesday, May 1, 2024 10am – 12:30 pm ET
Target Audience: Patients, Families, Clinicians, and Scientists
To register, click here.

Leads: Krista Eschbach, MD, (Children's Hospital-Colorado)
Teneille Gofton, MD, FRCPC, (Western Univ. Canada)

Day 3 Scientific Symposium : Metagenomics and autoantibodies
Thursday, May 9, 2024 10am -12:00 pm ET
Target Audience: Scientists and Clinicians
To register, click here.

"Metagenomics and Host Transcriptomics of NORSE"
Mary Rolfes-Karalius, MD, (UCSF)

"Novel autoantibodies in NORSE"
Aaron Bodansky, MD, (UCSF)

Discussion with Michael Wilson, MD, (UCSF).

Recordings of our 2023 NORSE Family Conference and Scientific Symposium are now available:

NORSE/FIRES Family Conference, June 6, 2023: https://youtu.be/QicS6txJoZ4

Recording of Medical & Scientific Symposium, June 7, 2023: https://youtu.be/hIHMjSOBGEY

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The most recent publication on the identification and treatment for NORSE and FIRES is here:
Wickstrom R, Taraschenko O, Dilena R, Payne ET, Specchio N, Nabbout R, Koh S, Gaspard N, Hirsch LJ; International NORSE Consensus Group. International consensus recommendations for management of New Onset Refractory Status Epilepticus (NORSE) incl. Febrile Infection-Related Epilepsy Syndrome (FIRES): Statements and Supporting Evidence. Epilepsia. 2022 Aug 23;63(11):2840–64. doi: 10.1111/epi.17397. Epub ahead of print. PMID: 35997591; PMCID: PMC9828002. This is a free article available to all at this time.

Recording of the NORSE Roundtable meeting held on December 3, 2022 in conjunction with the American Epilepsy Society Conference in Nashville is available here: (https://youtu.be/IzMeeK8xXQU)

Ronny Wickstrom, MD, PhD, Karolinska University Hospital, Sweden, gives more insight to the condition of NORSE and its study in a November 2022 ILAE interview podcast here: https://www.ilae.org/journals/epigraph/sharp-waves-podcast and on Spotify: https://open.spotify.com/episode/47AdihSTc153G6zFjs4r4x?si=BePet7_7TuG92wXgjA1bxw

Our second annual Medical/Scientific Symposium and NORSE/FIRES Family Conference (virtual) were held on June 15 & 16, 2022. The programs were endorsed by the Neurocritical Care Society

Recordings of the sessions can be found here:
Clinical Symposium : https://www.youtube.com/watch?v=59dVveERN38
NORSE/FIRES Family conference: https://youtu.be/gV9m9YhBMvs

Reference for consensus definitions of NORSE and FIRES:

Hirsch, L. J., Gaspard, N., van Baalen, A., Nabbout, R., Demeret, S., Loddenkemper, T., ... & Trinka, E. (2018). Proposed consensus definitions for new‐onset refractory status epilepticus (NORSE), febrile infection‐related epilepsy syndrome (FIRES), and related conditions. Epilepsia, 59(4), 739-744.