DSF_FullLogo_Color.png

Decoding Dravet Blog

Helping you to learn about the past, present, and future of Dravet syndrome and the Dravet Syndrome Foundation. The Decoding Dravet 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.

DSF Homepage Dravet Family

Get Involved in Advocacy for Dravet Syndrome

Last month, I had the opportunity to attend Rare Disease Week on Capitol Hill with the EveryLife Foundation for Rare Diseases. This event was a unique opportunity to unite with rare disease patients, caregivers, and advocates from around the United States to discuss and advocate for federal legislative initiatives that may impact those living with …

Get Involved in Advocacy for Dravet Syndrome Read More »

DSF Homepage Dravet Family

The 2023 DSF Patient Assistance Grant Program is now open!

Medical expenses are high when you have a loved one with Dravet syndrome, and we know everyone in our community needs help at one time or another. By providing financial assistance for necessary medical equipment, the DSF Patient Assistance Grant (PAG) Program provides a valuable resource to patients, helping them offer the best quality of care …

The 2023 DSF Patient Assistance Grant Program is now open! Read More »

DSF Homepage Dravet Family

DSF Supports the Development of an AI-powered Dravet Ontology

Dravet Syndrome Foundation (DSF) is excited to announce support and funding for a new special research project. DSF will support Dr. Satya Sahoo and Dr. Jeffrey Buchhalter to develop a Dravet Ontology. DSF is funding $240,000 over the next 2 years to support this effort. An ontology works as a framework to show connections and …

DSF Supports the Development of an AI-powered Dravet Ontology Read More »

DSF Homepage Dravet Family

A diagnosis brought us together. Our hearts keep us together.

DSF will be hosting monthly online sessions to offer caregivers the opportunity to connect and engage with peers, to support one another, as well as to ask questions of DSF and its staff. We know that exposure to stories, insights, and information sharing is particularly helpful when you are caring for someone with Dravet syndrome. …

A diagnosis brought us together. Our hearts keep us together. Read More »

Scroll to Top
Skip to content