NORSE Family Conference Recording June 2025
Summary:
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. This virtual event offered an accessible companion to the NORSE Scientific Symposium, bringing together leading physicians and parents of NORSE and FIRES survivors.
Chaired by Dr. Krista Eschbach (Children’s Hospital – Colorado), this family-focused session includes:
Lay summary of the NORSE Scientific Symposium and biorepository updates (Dr. Larry J. Hirsch, Yale)
Medical uncertainty and communication: perspectives from families and clinicians (Desirae Casas; Janie Yang and Ranjan Roy, parents)
Clinical care of NORSE (Dr. Kristen S. Fisher and Dr. Yi-Chen Lai, Baylor College of Medicine / Texas Children’s Hospital)
Neuromodulation treatments (VNS, DBS, RNS) (Dr. Laura Mantoan, King’s College London)
Please note: breakout sessions were not recorded to preserve the privacy of participants.
