News
NORSE Scientific & Family Symposium 2026
July 14 & 16
Day 1 What Differentiates the Acute versus the Chronic (recovery) Phases of NORSE/FIRES and how do these phases impact treatment?
July 14, 2026 11:00am – 1:30pm EST
Register separately for each day: https://yale.zoom.us/meeting/register/JFgnCCrbRGeUP6q1DCM5nA
11:00 am - 11:55 am. Acute vs Recovery Phase Clinical Features
The concept of the Acute Phase versus the Recovery Phase
Dr. James J. Riviello
11:20–11:35. The spectrum of clinical manifestations through each phase of NORSE
Dr. Andreas van Baalen
11:35-11:55. Family Panel Discussion (What we see)
Dr. Shabana Ali (UK)
Desirae Casas (USA)
Massimiliano Cignatta (Italy)
Karla Yankowski (USA)
11:55 - 12:05. The Evolution of Biomarkers with the Phases of NORSE
Serum/CSF Biomarkers: Dr. Aurelie Hanin
EEG & MRI Biomarkers: Dr. Ji Yeoun (Jenna) Yoo
Genetic Testing – When to test and re-analyze: Dr. Danielle Decampo
Family Perspective: Desirae Casas (USA)
Break
12:30 - 12:50 Antiseizure & Immune Therapy Treatment
Treatment Overview: Dr. Kristen Fisher
Family Panel Discussion (Treatment)
12:50 - 1:20 Clinician–Family Communication
Dr. Mark Wainwright
Family Panel Discussion (Communication)
1:20–1:30
Closing & Wrap-up
Dr. James J. Riviello
Dr. Nora Wong
Day 2 NORSE/FIRES: When do we change the approaches to treatment and what is the impact on outcome?July 16, 2026 11:00am – 1:30pm EST
Register separately for each day: https://yale.zoom.us/meeting/register/7ALCwXe-RcWZdyFvBME-MQ
11:00–11:45. Treatment De-escalation: How to decide:
Dr. Krista Eschbach
Panel Discussion: Treatment Decisions – Dr. Krista Eschbach (moderator)
Dr. Lawrence J. Hirsch
Dr. Olga Taraschenko,
Dr. Marios Kaliakatsos
Dr. James J. Riviello
11:45 - 12:25. Seizure Management: Moving From Seizure Burden to Quality of Life
Acute Management: Seizure number / seizure burden and impact on outcomes
Dr. Lawrence J. Hirsch
Chronic Management: Seizure number / burden and quality of life
Dr. Olga Taraschenko
Family Panel Discussion (Seizure Burden)
Dr. Dana Satir (USA)
Engin Kam (Turkey)
Tara Woodell (USA)
Rachel Liew (UK)
Break
12:30–12:45. When to de-escalate immune therapy – are there times to reconsider immune therapy?
Dr. Marios Kaliakatsos
Quality of Life: Perhaps the most important definition of outcome
Dr. Krista Eschbach
Family Panel Discussion (QoL)
1:20–1:30. Closing & Wrap-up
Dr. Krista Eschbach; Dr. Nora Wong
Driven by curiosity and built on purpose, this is where bold thinking meets thoughtful execution. Let’s create something meaningful together.
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.