Mary Chapman, features writer —

Most children with Dravet syndrome receive their diagnosis before they are a year old, and about seven months from the onset of their symptoms, according to a global survey of new caregivers. Additionally, an overwhelming majority of caregivers change physicians within the first four years, mainly due to…

To help ensure that those with Dravet syndrome receive high-quality care regardless of their financial situation, the Dravet Syndrome Foundation (DSF) again is offering its global Patient Assistance Grant (PAG) Program. “Medical expenses are high when you have a loved one with Dravet syndrome, and we know…

From sporting something purple to sharing graphics on social media, supporters are marking National Epilepsy Awareness Month (NEAM), observed each November to bring attention to epilepsy and its associated disorders, including Dravet syndrome. There are 65 million people around the world who live with the central nervous system…

The 4th annual Dance for Dravet will be presented Oct. 14 in St. Louis, Missouri to support the research of the Dravet Syndrome Foundation (DSF) to find better therapies for this type of epilepsy which is characterized by prolonged seizures. The event, which will be held at the…

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…

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…

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…