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…
Utah and Florida are the latest states to enact legislation aimed at ensuring that about 470,000 children and teens in the U.S. who have an epileptic disorder, such as Dravet syndrome, have a safe school environment, bringing to 14 the number of states that now have Seizure Safe Schools.
The World Health Organization (WHO) has issued a sweeping global draft action plan for epilepsy and related disorders, including Dravet syndrome, that outlines goals — including reducing death rates and stigma — through 2031. Officially called the Draft Intersectoral Global Action Plan on Epilepsy and Other Disorders…
Healthcare providers involved in diagnosing and treating rare diseases believe that increased physician education and collaboration with specialized facilities will have the greatest positive impact on treating these conditions over the next five years, according to results from a 2021 survey. Definitive Healthcare, a healthcare commercial intelligence company, conducted…
The Epilepsy Foundation has launched a free mobile app called Nile as a self-management healthcare tool to help people with epilepsy, including those with disorders such as Dravet syndrome. It replaces the foundation’s My Seizure Diary application, which for 15 years has helped patients to monitor and track seizures,…
Patient registries are a hot topic of rare disease research and many organizations are taking advantage of this resource by signing up their patient communities and connecting with researchers. Eric Sid, MD, program officer for the Office of Rare Diseases Research (ORDR), said it is difficult to estimate how…
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