News

Mutations in a specific gene could be behind adult Dravet syndrome with motor features of Parkinson’s disease, according to case report. The study, “The adult motor phenotype of Dravet syndrome is associated with mutation of the STXBP1 gene and responds well to cannabidiol treatment,” was published in the…

A high-fat, low-carbohydrate diet with moderate protein can reduce the frequency of seizures and significantly improve overall health of some children with drug-resistant epileptic syndromes, according to recent research. The study, “Ketogenic diet effects on 52 children with pharmacoresistant epileptic encephalopathy: A clinical prospective study,” was published…

Cannabis-based experimental therapies currently under research, in particular Epidiolex, show significant promise to treat therapy-resistant epilepsy, including Dravet syndrome, according to a recent review. The report “Investigational cannabinoids in seizure disorders, what have we learned thus…

ZX008’s mechanism of action may avoid the side effects caused by other antiepileptic treatments, preclinical research suggests. The potential treatment is also being studied in a series of pivotal clinical trials. A study based on this research, “Fenfluramine diminishes NMDA…

Treatment with topiramate (Topomax), lacosamide (Vimpat) and carbamazepine enabled a young woman with Dravet syndrome to potentially stop having seizures and eased her behavioral problems, according to a case report. The study, “Retracing…

As President Trump signed the recently passed Right to Try legislation into law in a White House ceremony, Jordan McLinn of Indianapolis tried twice to embrace him. The third time, 9-year-old Jordan finally got the hug he wanted — as well as a kiss on the forehead. The video of…

Early identification and diagnosis of seizures can have major implications for their treatment and accurate prognosis. But in most cases it can be a challenge to differentiate between epileptic seizures and abnormal non-epileptic movements early in life, a review study suggests. In the study, “Benign and…

Tilray Canada has launched its newest product, Tilray 2:100, a formulation of therapeutic cannabis oil containing a high concentration of cannabidiol (CBD), which may help treat Canadian patients with conditions like Dravet syndrome. “We are excited to offer this highly concentrated CBD product to patients in Canada. We…

Finding treatments and potential cures for rare diseases is crucial, but so is the quality of patients’ lives — a rather nebulous term that means different things to different people. “Recently, there’s been much more of a focus on Quality of Life (QoL) issues, real-world evidence and patient-reported outcomes,” said…

Stiripentol is not a cost-effective treatment for Canadian Dravet syndrome patients, and decision-makers should consider funding it, according to a recent cost analysis. The study, “Economic Evaluation of Stiripentol for Dravet Syndrome: A Cost-Utility Analysis,” was published in PharmacoEconomics. Combination therapy, or the use…