The recording for the NORSE Scientific Symposium - June 3, 2025
Early recognition, treatment and communication of NORSE/FIRES (virtual)
is here: https://youtu.be/Pum8dU-dmWg

Lead: James J. Riviello, Jr., MD (Baylor, Texas Children’s Hospital)
Recognition NORSE/FIRES: Clinical Course/Differential Diagnosis/Evaluation,
Ronni Wickstrom, MD (Karolinska University Hospital)

Biomarkers for NORSE/FIRES
Raquel Farias-Moeller, MD (Milwaukee Hospital-Children's Wisconsin) and Yi-Chen Lai, MD (Baylor, TCH)

Mechanisms of Refractory SE and Treatments
Nicolas Gaspard, MD, PhD (Hôpital Erasme - ULB)

Promising Immunotherapies
Kristen S. Fisher, DO (Baylor, TCH) Intrathecal Dexamethasone and
Eyal Muscal, MD (Baylor, TCH) Newer Immunotherapies

Prognosis/Communication of NORSE
Krista Eschbach, MD (Children’s Hospital – Colorado) and
Lakshmi Damerla, parent of FIRES survivor

NORSE/FIRES Biorepository update and PCORI study
Larry J. Hirsch, MD (Yale)

The recording for the NORSE Family Conference - June 4, 2025
Medical Updates and Improving Doctor-Family Communication (virtual)
is here: https://youtu.be/3xxi0jwcsNE

Lead: Krista Eschbach, MD (Children’s Hospital – Colorado)
Lay Summary of the NORSE Scientific Symposium and Biorepository Updates
Larry J. Hirsch, MD (Yale)

Medical Uncertainty and Communication: Family and Clinical Perspectives
Desirae Casas, parent
Janie Yang and Ranjan Roy, parents

Clinical care of NORSE
Kristen S. Fisher, DO (Baylor, TCH) and
Yi-Chen Lai, MD (Baylor, TCH)

Neuromodulation (VNS / DBS / RNS)
Laura Mantoan, MD, PhD, (Kings College)

*Breakout sessions were not recorded to preserve the privacy of the patients and families.

The recording of a clip of only the parents’ perspectives from the Scientific Symposium and the Family Conference is here: https://youtu.be/Khw6Y8WStsw

For references for the scientific symposium curated by James Riviello, MD., click below.

———————————————————————————————————————————————--Recordings of our 2024 Scientific Symposium and Family Conference are below:

Day 1 Scientific Symposium : Genetic update 4/29/24
A recording of this symposium is available here: https://youtu.be/WVljHEogVgY

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

"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 5/1/24
A recording of the Family Conference is available here: https://youtu.be/i-ICGNsm7mU?feature=shared

Day 3 Scientific Symposium : Metagenomics and autoantibodies. 5/9/24
A recording of this symposium has been released and is available here: https://youtu.be/4VptZl5xiVk

"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

———————————————————————————————————————————————--

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.

The NORSE Institute is a 501(c)(3) charitable organization
through the fiscal sponsorship of CURE Epilepsy
www.norseinstitute.org