News

The Dravet Syndrome Foundation (DSF) is partnering with the Mason’s Movement Foundation to provide bereavement support to families who have lost someone to Dravet syndrome. The partnership connects bereaved families to a Mason’s Movement initiative called the Good Mourning Project, which provides resources, support, and remembrance items…

The newly created DANCE checklist, to be completed by caregivers, may help diagnose additional conditions that often occur alongside Dravet syndrome by identifying non-seizure features — such as language, cognitive, and behavioral problems — seen with this type of epilepsy, according to a pilot study that tested the use…

Targeting a heart protein called NaV1.6 may help prevent sudden death in adults with Dravet syndrome, a study in mice suggests. The study, “Cardiac-Specific Deletion of Scn8a Mitigates Dravet Syndrome-Associated Sudden Death in Adults,” was published in JACC: Clinical Electrophysiology. Dravet syndrome is caused by…

The U.S. Food and Drug Administration (FDA) has lifted its partial clinical hold on higher doses of zorevunersen, an experimental treatment for Dravet syndrome currently being tested in Phase 1/2 trials. The FDA placed the hold based on preclinical data in 2020, limiting dosing of zorevunersen in studies taking…

Parents of children with Dravet syndrome in Spain say they don’t get enough support to help meet the emotional and economic challenges of the disease, a study found. “The findings of this study underscore the need for policy reforms that specifically address the challenges faced not only by individuals…

Although high-quality data are lacking, available evidence suggests that a procedure called vagus nerve stimulation (VNS) — which targets a large nerve connecting the brain and the gut — can help to reduce seizure frequency in some people with Dravet syndrome. That’s according to a new study titled…

Having a child with Dravet syndrome affects the whole family, and it’s common for parents to feel burnt out and sleep-deprived and for siblings to feel unseen, a study reported. Clinicians should be proactive about offering information about support networks for families affected by Dravet syndrome, the study’s authors…

Diacomit (stiripentol) may be more effective than other available Dravet syndrome treatments at reducing the frequency of seizures, according to an analysis of data from multiple clinical trials. The therapy “can be recommended as the first choice among the included drug regimens for reducing seizures in [Dravet] patients,”…

The U.S. Food and Drug Administration (FDA) has granted breakthrough therapy designation to Longboard Pharmaceuticals‘ bexicaserin to treat seizures associated with developmental and epileptic encephalopathies (DEEs), including Dravet syndrome, in patients 2 and older. The designation is meant to accelerate the development and regulatory review of medications intended to…

Epidiolex (cannabidiol) can help to reduce seizure frequency in some adults with generalized or localized forms of epilepsy — including Dravet syndrome — that are resistant to other anti-seizures medications, according to a retrospective study in France. Among the 27% of patients who responded to this treatment, most…