News
2026 NORSE SCIENTIFIC & FAMILY SYMPOSIUM (VIRTUAL):
From Acute to Chronic: How to Tell? What to Do?
Recordings available now:
DAY 1 · TUE, JULY 14. Acute to Chronic — Where’s the Line?
Clinical features of Acute vs Recovery Phases and Evolution of Biomarkers across the Phases
Part 1: https://youtu.be/mbDlGA3c42o
Antiseizure & Immune Therapy and Physician-Family Communication
Part 2: https://youtu.be/-MF0M3C6xfc
DAY 2 · THU, JULY 16. When Do We Change Course?
Treatment De-escalation Decisions, Seizure management: from Seizure burden to Quality of Life
Day 2: https://youtu.be/UskJHb5xKb8
NORSE Family Registry to Close at the End of 2025
The international registry, hosted on the REDCap online platform, will officially close in December 2025. Families and patients who would like their experiences included are encouraged to enrol before the deadline.
NORSE Prospective Study
Clinical data and biological samples (serum, CSF, tissue) are being collected.
New ILAE Podcast Sheds Light on NORSE: Interview with Dr Ronny Wickström
Dr Ronny Wickström, MD, PhD, from Karolinska University Hospital in Sweden, shares expert insight into New-Onset Refractory Status Epilepticus (NORSE).
International NORSE Consensus Recommendations Published
A collaborative research initiative involving 48 international medical experts has resulted in the publication of “International consensus recommendations for management of New Onset Refractory Status Epilepticus (NORSE) including Febrile Infection-Related Epilepsy Syndrome (FIRES): Statements and Supporting Evidence.”
Join the Growing NORSE/FIRES Online Community
Join our private Facebook group for people living with NORSE/FIRES and their loved ones to connect, share experiences, ask questions, and support one another.