NORSE Family Conference
The NORSE Family Conference is an annual virtual gathering designed to connect families, survivors, clinicians, and researchers around a shared goal: to improve the care, communication, and long-term outcomes for those affected by NORSE (New Onset Refractory Status Epilepticus) and FIRES (Febrile Infection-Related Epilepsy Syndrome).
Why This Conference Matters
Families facing NORSE or FIRES are often thrust into crisis with little warning, limited information, and enormous uncertainty. Recovery can be long, unclear, and lonely. But your experiences are powerful and essential.
What families share during this conference helps shape future care. Insights from previous sessions have directly informed clinical trial funding applications, including the recently funded PCORI study the first trial of its kind in NORSE.
What to Expect
The Symposium is focused, fast-paced, and practical. Each session tackles real-world challenges faced by clinicians and researchers, with plenty of time for questions and discussion. Presentations often include emerging data and experimental approaches that haven’t yet made it to publication.
Key elements include:
Clear summaries of the latest research, explained in everyday language
Honest conversations about uncertainty, recovery, and grief
Time for questions and discussion, not just presentations
Small-group breakout sessions focused on specific topics like medication side effects, long-term outcomes, and channelling grief into purpose
Opportunities to shape future research and advocacy
Who Should Attend?
Families and caregivers of people affected by NORSE/FIRES (past or present)
NORSE survivors and advocates
Clinicians, researchers, and professionals who want to understand the patient and family experience more deeply
No prior medical knowledge needed, just your presence and your perspective.
If you’re a clinician or researcher
We encourage you to attend both this and the NORSE Scientific Symposium the day before. You’ll gain valuable insights from families that can strengthen your work and challenge assumptions.
Previous Family Conference Recordings
Recordings are freely available for anyone who couldn’t attend live or wants to revisit key sessions. Each year brings new voices and perspectives, helping to build a more informed and compassionate NORSE/FIRES community.
Join the next Family Conference
This event is hosted annually in June and our next event will be in 2026.
Sign up to our newsletter below and we will send you details and registration information as soon as dates are confirmed.