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.
Dravet Syndrome has New Diagnostic Codes
New ICD-10 codes are now in effect for Dravet syndrome. Previously, a patient diagnosed with Dravet syndrome would be entered into the medical coding system under a non-specific epilepsy code that did not fully represent the spectrum of medical [...]
What Cup will you Give Up?
It’s almost March and that means DSF is getting ready for our annual virtual fundraiser. We need your help and registration is FREE! Are you looking for a fun way to help raise awareness of Dravet syndrome, while raising [...]
2021 DSF Virtual Conference
Research and new treatments continue to move forward in the field of Dravet syndrome. With the postponement of our 2020 conference due to the pandemic, we wanted to offer a virtual learning opportunity to bridge the gap until we [...]
Finding Resilience Through Reframing: Parents’ Perspectives
As a Dravet parent or caregiver, have you ever thought about the term “reframing?” This week’s guest blog post comes from Barbara Swoyer, who recently wrote about the concept of reframing for the latest issue of NIH MedLine Plus [...]
Seizure Action Plan Awareness Week
On February 1, 2020, the Seizure Action Plan (SAP) Coalition launched its new website at www.seizureactionplans.org. This new website offers information and resources for for patients, professionals, and advocacy organizations to learn about and spread awareness of: what a [...]
SUDEP: Education, Research, and Prevention
Sudden unexpected death in epilepsy (SUDEP) is a topic that brings up difficult and complex emotions, and, as such, it often goes undiscussed. However, talking about SUDEP can empower families with awareness and preventative strategies, literally helping to save [...]