How to use this website:
Professionals: See proposed diagnostic checklist, research updates, grant opportunities and discharge planning guide. Families: Find basic definitions and family resources. Check Medical Profession section which you may want to forward to your physician. Comments welcome via the Contact page. Thank you.
Nora Wong, Ph.D., Executive Director

News

The NORSE Institute will host its second annual Medical/Scientific Symposium and NORSE Family Conference (virtual) on June 15-16, 2022.

The link to register for both events is here.

Day 1 Medical/Scientific Symposium, Wednesday, June 15, 2022
10 am - 12:30 noon. EDT
Target audience: Clinicians and Scientists

• Conclusions from the NORSE/FIRES Delphi study
  Points of consensus and implications for practice and research. 
  Speaker: Ronny Wickström, MD, PhD (Karolinska University Hospital)

•  Case management of 17-year-old patient with expert commentary
  Panelists: Jim Riviello, MD (Baylor, pediatric neurology); Emily Gilmore, MD (Yale, adult neurointensive care); Ingo Helbig, MD (CHOP, genetics), Eyal Muscal, MD (Baylor, rheumatology) and Mike Wilson, MD (UCSF, metagenomics)

Data Blitz

• Immune dysregulation in NORSE/FIRES patients
  Aurélie Hanin, PharmD, PhD (Yale, Pitié-Salpêtrière Hospital, Paris)

• Neuropathology in NORSE: Current knowledge and ongoing research efforts
  Eleonora Aronica, MD, PhD (U of Amsterdam) and Anita Huttner, MD, (Yale)

•  Seasonality of NORSE  
  Jorge Cespedes, MD, (Yale)

 NORSE/FIRES Collaborative Biorepository at Yale, Larry Hirsch, MD (Yale)

Day 2 NORSE/FIRES Family Conference Thursday, June 16, 2022
10:00 am -12:30 pm EDT
Target audience: Patients, Families and Clinicians

·      Ask the Experts (questions to panel pre-submitted from patients and families)

Panelists: James Riviello, Raquel Farias-Moeller, Nicolas Gaspard, Marissa Kellogg representing pediatric and adult perspectives

 ·      This is my life
Patients and families say what they want studied and done.

·      Early Findings from NORSE/FIRES Family Registry, Teneille Gofton

·      NORSE/FIRES Collaborative Biorepository, Lawrence Hirsch

Breakout sessions led by clinicians, neuropsychologists, and bereavement counselors.        

·      Plenary session
Integrating wisdom from breakout sessions

The event will be recorded. We will post the recording and resources from the symposium and conference on our website.

The NORSE Collaborative Biorepository at Yale has received IRB approval
to receive biosamples from anywhere in the world without the donating center needing an IRB. Details on sampling and shipping protocols to follow.

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The NORSE/FIRES Family Registry has been translated into Mandarin Chinese. See details here.

There has been a dramatic increase in NORSE/FIRES publications over the past two years. Below is an Annotated Reference List of over 130 articles on NORSE and/or FIRES organized into categories. Many thanks to Drs. Zubeda Sheikh, Jorge Cespedes, Andreas van Baalen, Nicolas Gaspard, and Lawrence J. Hirsch, for the NORSE Institute. (posted 12/3/21) We welcome additions to this list via the Contact page.

The NORSE Institute held its 3rd NORSE Roundtable Discussion meeting at the American Epilepsy Society Annual Conference on Dec. 4, 2021. The meeting covered introduction of the new open NORSE/FIRES biorepository, project updates, data blitzes, discussion of Dr Ronny Wickstrom's Delphi Consensus study on the evaluation and management of NORSE and FIRES, and next research steps. View a recording of the meeting below.

Refractory Status Epilepticus in Children was the topic of the Pediatric Neuro-critical Care Education series in December 2021. Thanks to the moderator, Dr. James Riviello, a link to the taped discussion of the management of FIRES by an expert panel is below.

We now offer a NORSE/FIRES Brochure that can be printed and given to families. It contains FAQ’s and links to more detailed information available on this website. It is a tangible resource for families who often feel overwhelmed during the acute phase of NORSE and FIRES and may prefer to access information gradually. (If you print from a desktop printer, chose double-sided print, “flip on short edge” option.)

So little is understood about NORSE and FIRES. Doctors need information about every patient to advance the understanding and treatment of NORSE. Participate in the NORSE/FIRES Family Registry. Learn more here.

For Research updates on NORSE and FIRES, click below.