Working Together to Find an Effective Treatment for NORSE & FIRES

A global initiative to advance research, connect and support families and medical professionals, and improve outcomes for patients with New Onset Refractory Status Epilepticus (NORSE) and its sub-type, febrile infection-related epilepsy syndrome, (FIRES).

  • For Medical Professionals

    We are building a centralized hub for healthcare providers seeking the latest in NORSE and FIRES care and research.

  • For Patients & Families

    The NORSE Institute provides support, information, and opportunities to connect with others who understand what you’re facing.

person having an eeg

Our Mission

The NORSE Institute supports research, treatment, and the global community of patients, families, and clinicians working to improve outcomes and long-term quality of life.

  • New Onset Refractory Status Epilepticus (NORSE) is a rare, life-threatening condition where seizures continue despite treatment and no clear cause like a brain injury or infection is found. It often affects previously healthy children and adults with no history of epilepsy.

    The most common known cause is autoimmune encephalitis, but in about half of cases, the cause remains unknown these are referred to as cryptogenic NORSE. Because many possible causes exist (some not yet understood), NORSE is described as having a heterogeneous etiology.

  • Febrile Infection-Related Epilepsy Syndrome (FIRES) is a subtype of NORSE where seizures follow a fever within two weeks of onset. FIRES affects both adults and children and is no longer considered a separate condition from NORSE.

    Both NORSE and FIRES are poorly understood, carry high risks of death and long-term disability, and often lead to epilepsy or cognitive, psychological, and physical impairments. However, recovery is possible and research is vital.

Our Global Network

While headquartered in the United States, the NORSE Institute collaborates with medical professionals and families across the globe.

team of NORSE experts

Contribute Your Expertise

We welcome contributions from clinicians, researchers, and medical professionals who want to help expand and refine the knowledge base on NORSE and FIRES.

If you’ve published articles, recorded podcasts, or have insights or resources you believe could inform others, we’d love to hear from you. We include research updates and opportunities to collaborate or participate in research on our website and in our NORSE Research Bulletin emailed directly to a large community of medical professionals

If you’ve been directly involved in the clinical care of a NORSE patient and would like to be included in the NORSE Medical Directory, please contact us.

Help support our work on NORSE & FIRES

Too many families face this devastating illness with no answers, limited treatments, and little support. The NORSE Institute is a 501(c)(3) charitable organisation through the fiscal sponsorship of CURE Epilepsy.

Your donation helps fund our work in life-saving research and global collaboration.

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)

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