Get regular updates to your inbox.
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,…
Olivetolic acid, a precursor of cannabidiol (CBD), resulted in protective effects against fever-induced seizures in a mouse model of Dravet syndrome, a study shows. These effects were comparable to those previously reported with CBD in this model, suggesting that olivetolic acid may have the potential to reduce seizures in…
The European Commission is expected to propose a new governing framework for health data next month, called the European Health Data Space (EHDS), with the aim of connecting national health systems to facilitate secure and efficient transfer of data across systems in different European nations. The move is expected to…
Nearly one month of repeated dosing of BMB-101, Bright Minds Biosciences’ experimental oral therapy for Dravet syndrome, was found to be safe and well-tolerated in mice and dogs. These were the findings of toxicology studies that began in September and are intended to support regulatory clearance of…
The National Organization for Rare Disorders (NORD) has updated its State Report Card to make it more digitally friendly and added telehealth to its categories of rare disease policy issues in a nod to its increased use during the ongoing COVID-19 pandemic. NORD’s report card project began seven…
Get regular updates to your inbox.