About the NORSE Institute
We are 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).
Our Strategy
To increase the awareness of NORSE; to stimulate, integrate and support research; and to develop a shared community of NORSE researchers and families.
The NORSE Institute is a 501(c)(3) charitable organisation through the fiscal sponsorship of CURE Epilepsy.
Resources for Healthcare Professionals
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NORSE Institute Medical & Scientific Advisory Board (MSAB)
Presiding clinicians can get insights to their acute case from the MSAB by sending a de-identified patient summary and their questions to the contact page via their center’s professional email. Case discussion will occur via group email.
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International Case Conference
An active, acute NORSE/FIRES case is presented online to an international audience, usually every second Friday of the month at 9am ET. These brainstorming sessions are organized by Eyal Muscal, MD (Baylor/TCH) and Marios Kaliakatsos, MD (GOSH). To present your case on the program, or to confirm schedule/time, email: Divya.Thomas@bcm.edu
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Cytokine Analysis from NORSE/FIRES Biorepository
For patients in the acute phase, cytokine results can be reported back in a timely manner which may provide critical insights.
Yale handles the consent process with the families and covers the cost of shipping.
Resources for Patients & Families
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Community Support Programs
We host monthly online support meetings that bring together patients, families, and caregivers. These gatherings create connections, facilitate shared experiences, and provide ongoing support throughout the journey.
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Family Registry Database
The portal to the NORSE Family Registry is on our website. This Registry captures patient information in a comprehensive database
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Information & Resources
The NORSE newsletter delivers science updates and shared resources to patients and families
Research
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NORSE/FIRES Biorepositories
There are now two open, coordinated, and collaborative NORSE/FIRES biorepositories based at Yale and Paris Pitié-Salpêtrière. These repositories collect samples from patients during both the acute and chronic phases of NORSE/FIRES, as well as from control groups, including adults and children.
We handle family consents, cover shipping costs and share remaining samples and clinical data with qualified investigators.
Please inform your patients’ families of this opportunity to contribute samples to these repositories. Giving this precious gift is one way that families have derived meaning from this otherwise surreal syndrome.
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Scientific Conferences & Meetings
Our annual Scientific Symposium and Family Conference, brings together medical professionals, patients and their families to share updates and insights across disciplines.
We also host the annual NORSE Roundtable meeting held in conjunction with the American Epilepsy Society annual meeting.
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News Briefs
The NORSE Research Bulletin provides clinicians and scientists updates on NORSE research programs, grant opportunities and relevant publications.
Why We Began
In 2013, just three months after graduating from Stanford University, 22-year-old Daniel Wong was found unresponsive and then gripped by prolonged seizures. He had no history of epilepsy, no known infection or injury. Doctors placed Daniel in a medically induced coma and tried every treatment available. None of them worked. Daniel died less than three months later, never regaining consciousness.
Daniel’s doctors had no explanation for his illness and his autopsy report found no identifiable cause. His mother, Nora Wong, reacted with disbelief and became determined to unravel the mystery of her child’s illness. In 2015, she founded the NORSE Institute with Lawrence Hirsch, MD, (Yale) and Nicolas Gaspard, MD (Erasme Hopital, Brussels) who still serve as co-chairs of the Institute’s medical and scientific advisory board.
As Executive Director, she has brought together families, clinicians and basic scientists who experience this rare, mysterious illness from different perspectives to work together to solve the puzzle of these devastating seizures.
Her goal was simple but ambitious: to make sure no family has to face NORSE or FIRES without answers, support, or hope for better treatment.