Decoding Dravet
Helping you to learn about the past, present, and future of Dravet syndrome and the Dravet Syndrome Foundation. This blog will keep you up to date on current research, treatment options, advocacy efforts, community activities, and other topics that are important to the Dravet syndrome community.
New Resource for your Child’s Healthcare Team
Receiving a diagnosis of Dravet syndrome is devastating. All the dreams and hopes you have for your child and family are suddenly turned upside down, leaving you with uncertainty and fear of the unknown. Once things begin to settle [...]
Join the Fight!
Get ready for 2021 Dravet Syndrome Awareness Month this June! We invite you to JOIN THE FIGHT and show your support through our t-shirt fundraiser on Custom Ink, which runs from today through April 30th. Orders are estimated to [...]
Guest Blog: Results from DSUK survey on the patient experience with COVID-19 vaccinations provides reassurance
Our caregiver community has been anxious to learn about the experiences of patients with Dravet syndrome who have received the COVID-19 vaccination. Our friends at Dravet Syndrome UK (DSUK) recently surveyed their community to gather information on the [...]
Gene Therapy for Dravet Syndrome
While three new medications have come to market for Dravet syndrome in the past several years, only a portion of patients achieve adequate seizure control. Even for those who experience longer periods of seizure-freedom, the other comorbidities of [...]
Natural History Study of Children with Dravet Syndrome Begins
The first patient was just enrolled in ENVISION, a natural history study being conducted by Encoded Therapeutics. There are 7 recruiting study sites, including one in Australia, and two additional sites are currently being added. The study does [...]
New Study of Dravet Syndrome in Adult Patients
Dr. Danielle Andrade, an adult neurologist who is an expert in Dravet syndrome (DS), is currently conducting a study of adults with DS to improve the understanding of seizures, symptoms, comorbidities, and daily life as patients age. Part [...]