Dravet Syndrome
New Dravet syndrome research, summarized each month in plain language.
2026 so far: So far in 2026 (January-September), fenfluramine evidence stayed the most consistent for fewer convulsive seizures, while real-world CBD/perampanel/device reports showed variable benefit and tolerability. Read the 2026 review
We also cover clinical trials.
Yearly update
2026 so far
- Fenfluramine outcomes. The months covered added information beyond seizure counts, including status epilepticus.
- Other add-ons and devices. Real-world follow-up in the months covered showed a wide range of responses.
- Newer therapies. Human results in the months covered were mixed, and safety uncertainty was prominent.
- Daily life outcomes. Measurement in the months covered leaned more toward behavior, sleep, and participation.
- Risk monitoring. The months covered put more focus on status epilepticus, SUDEP estimates, and rare complications.
New
September 2026
- CBD in practice. Many had fewer seizures, but side effects were common.
- Fenfluramine regimens. These regimens were linked with fewer seizures, without clear thinking differences.
- Home tracking priorities. Caregivers prioritized behavior, independence, and social participation.
August 2026
- Convulsive seizure frequency. Fenfluramine was linked to fewer convulsive seizures across studies.
- Status epilepticus episodes. Real-world data linked fenfluramine to fewer status epilepticus episodes.
- Cenobamate durability. Cenobamate effects appeared less sustained in Dravet syndrome.
- Non-seizure challenges. A caregiver interview more consistently tracked non-seizure difficulties.
July 2026
- Perampanel add-on. Many people had fewer seizures; some reported seizure freedom.
- Medicine combinations. Guidance stressed drug interactions and close monitoring.
- Fenfluramine follow-up. Function was often stable or better, with frequent side effects.
June 2026
- Fenfluramine in practice. Everyday-care data linked it with fewer seizures and urgent visits.
- Other add-on drugs. Cenobamate and perampanel evidence was limited and Dravet-specific data was unclear.
- SCN1A test results. After high-risk fevers, SCN1A changes often came before later Dravet.
- Mortality and SUDEP. Trial data estimated mortality and SUDEP, but may miss real-world risk.
May 2026
- Fenfluramine and seizures. Clinic reports and pooled analyses continued to link fenfluramine with fewer seizures for many people, though results varied.
- CBD benefits and interactions. Trial summaries continued to show average seizure reductions with pharmaceutical-grade CBD, with side effects reported more often when used with valproate or clobazam.
- Responsive neurostimulation outcomes. In a small report, responsive neurostimulation was linked to large seizure reductions in some people with SCN1A-spectrum epilepsy, while others had little change.
- SCN1A gene approaches in mice. Mouse studies of SCN1A-targeted approaches reduced seizures, but also showed a narrow safety margin for dosing.
April 2026
- Daily functioning on fenfluramine. In a small report, some families described better attention and communication with fenfluramine, and these changes did not always match seizure changes.
- Heart monitoring plan. An expert group described a more structured schedule for heart-related monitoring before, during, and after fenfluramine treatment.
- Caregiver distress drivers. Questionnaire results suggested parent distress rose with child behavior challenges and the demands of navigating care systems.
- Early clues to severity differences. Early research linked genetics, inflammation-related blood markers, and lab models to differences in Dravet severity, but these signals are not ready for routine use.
March 2026
- Soticlestat phase 3 result. Seizures decreased more with soticlestat than placebo, but the trial’s main planned statistical test did not clearly pass.
- Zorevunersen longer follow-up. Longer follow-up reported large drops in convulsive seizures, alongside important safety events.
- Real-world symptom changes. Health record studies showed that seizure types and frequency often changed over time, and developmental challenges were common.
February 2026
- Early behavior and communication. Parent reports described behavior and social-emotional difficulties starting early and becoming more noticeable through the preschool years, with communication challenges often occurring alongside more severe behavior concerns.
- Ongoing out-of-pocket costs. Caregivers reported that costs could remain high even with reimbursement, reflecting an ongoing practical burden beyond medical bills.
- Preclinical treatment concepts. Mouse and lab studies reported seizure-related improvements by reducing brain inflammation or increasing Nav1.1 protein activity, but these early findings do not show benefit or safety in people.
- Heat and temperature change triggers. In parent interviews, heatwaves and abrupt temperature changes were commonly described as seizure triggers, which reflects shared experience rather than measured trigger frequency.
January 2026
- VNS follow-up. Real-world follow-up often reported fewer seizures with VNS.
- Daily activity coaching. A small online parent program reported easier daily activities.
- Cannabidiol response range. Cannabidiol effects varied, and some children had side effects.
- Gene-related responses. Genetics may help explain why medicine effects differ by gene.
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