Watch the full recording of the NORSE Family Conference held on June 4, 2025, focused on sharing medical updates, improving communication between families and clinicians, and creating space for lived experience.

References for the scientific symposium curated by James Riviello, MD.

Explores the emotional and ethical complexities that can lead physicians to delay or avoid initiating palliative care conversations particularly in the context of conditions like NORSE

The following are terms that may come up in your conversations with medical staff that you should know.

This virtual conference brought together experts, families, and clinicians to share the latest updates in NORSE/FIRES research and care.

Access the full recordings from the NORSE Institute’s 2024 Scientific Symposium and Family Conference.

The Supportive Listeners initiative connects families of current patients with volunteers who have experienced NORSE in their own lives.

Medicaid waiver programs can offer essential insurance coverage and home-based services that many NORSE patients would not normally qualify for due to income limits.

These recordings from the 2023 NORSE Institute events offer insights into current clinical care practices, family experiences, and emerging scientific research on New-Onset Refractory Status Epilepticus (NORSE) and Febrile Infection-Related Epilepsy Syndrome (FIRES).

This recording covers the NORSE Roundtable meeting held in conjunction with the American Epilepsy Society Conference in Nashville on December 3, 2022.

The complexity, severity, and uncertainty of NORSE and FIRES can raise sensitive questions around communication and decision-making, including the potential role of palliative care.

Dr. Ronny Wickstrom, MD, PhD, from Karolinska University Hospital in Sweden, offers an expert perspective on New-Onset Refractory Status Epilepticus (NORSE) in this in-depth interview.

In this ILAE (International League Against Epilepsy) interview, Dr. Lawrence Hirsch (Yale University) and Dr. Nicolas Gaspard (Erasme Hospital, Belgium) explain what NORSE is, the current state of research, and how clinicians are working to better understand and treat the condition.

Annotated reference list

This peer-reviewed publication presents the most comprehensive international consensus to date on the identification and treatment of New-Onset Refractory Status Epilepticus (NORSE) and Febrile Infection-Related Epilepsy Syndrome (FIRES).

The NORSE Institute’s second annual Medical and Scientific Symposium alongside the NORSE/FIRES Family Conference took place virtually on June 15 and 16, 2022.

This resource provides a sample treatment algorithm for managing generalised convulsive status epilepticus (GCSE) in both adults and children.

The NORSE Institute held its first-ever international Scientific Symposium for laboratory and clinical scientists, alongside a dedicated Family Conference for patients, families, clinicians, and researchers on March 4–5, 2021.

This article, published in Mayo Clinic Proceedings (May 2019), explores the unique communication challenges that arise when supporting patients and families affected by New Onset Refractory Status Epilepticus (NORSE).