News

The prevalence of Dravet syndrome in Sweden was one in 45,000 at the end of 2018, with most identified patients having a disease-causing mutation in the SCN1A gene, a study found. Data showed the rate of new diagnoses was higher, the age at diagnosis lower, and the use of contraindicated sodium…

An international panel of physicians and caregivers with expertise in Dravet syndrome is recommending genetic testing in children ages 2 to 15 months who develop normally but have a prolonged seizure after fever or vaccination. Among several consensus statements, the panel also recommended a number of currently available therapies…

Anticonvulsant therapies in the benzodiazepine class successfully suppressed nearly 62% of all episodes of status epilepticus in children with Dravet syndrome, a study reported, whereas second-line treatments were required in the remaining cases. As no identifiable clinical features could distinguish benzodiazepine (BZD) responders from non-responders, findings overall suggest that BZD…

The National Organization for Rare Disorders’ (NORD) “Living Rare, Living Stronger Patient and Family Forum” is back in person on June 26 for a day of learning and networking in Cleveland, Ohio. The event, which brings together the rare disease community, will take place at the InterContinental Cleveland Conference…

From remembering those lost to Dravet syndrome to sharing patient stories, supporters are gearing up to mark Dravet Syndrome Awareness Month, observed each June to call attention to this severe type of epilepsy and the 1 in 20,000 to 40,000 individuals globally it is thought to affect. International Dravet…

A Phase 3 clinical trial is recruiting Dravet syndrome patients between the ages of 2 and 21 to assess the effectiveness, safety, and tolerability of the investigational treatment soticlestat when taken with other anti-seizure therapies. Called the Skyline study, the trial (NCT04940624) will test soticlestat as an…

Adults with Dravet syndrome commonly experience walking difficulties that tend to worsen with age, a small study reports. “In this study, it was observed that gait parameters and parkinsonian symptoms were abnormal across all ages, but clearly worse in older patients, suggesting a progressive gait disorder,” researchers wrote. By…

A type of brain nerve cells, called parvalbumin-expressing (PV) interneurons, was able to generate electrical signals in a mouse model of Dravet syndrome, but failed to properly transmit them to neighboring cells, according to a recent study. This failure in a process called synaptic transmission may underlie the symptoms of Dravet…

With the signing into law of Brynleigh’s Act by Gov. Larry Hogan, Maryland has become the 15th state to pass legislation that ensures that children and teens who have an epileptic condition such as Dravet syndrome have a safe school environment. In recent weeks, Utah and Florida enacted…

A Russian military plane crash near Tetiana Zamorska’s home in Kyiv, Ukraine, was a sign that it was time for her and her family to leave. The treacherous, 34-hour pilgrimage that ultimately brought the group of eight by car to temporary accommodations in neighboring Poland last month was physically and emotionally difficult,…