Hi.
Whether this is your first visit or one of many—welcome. We know it takes courage to search for support, and showing up here means more than you realize.
Yes, courage. Courage to face an unfamiliar diagnosis. Courage to untangle medical jargon that feels like a new language. Courage to do even more in days already full with doctor appointments, therapy sessions, IEP meetings, sleepless nights, and battles with insurance—all while holding your family together.
Courage, because this journey is hard.
Dravet syndrome is an uphill battle of love, frustration, discovery, and deep exhaustion. It’s also one of fierce resilience. Here at DSF, we see families like yours every day—families who hold on to hope and keep pushing forward, even when the path is steep.
We believe in a future with better treatments.
A future where families have answers sooner, therapies are tailored to each child, and no one has to face this diagnosis alone. Every milestone matters. Every story matters. Every family matters.
You are not alone.
We’re here to walk beside you—with information, community, advocacy, and support that evolves with your child’s needs. No one has all the answers, but together, we are learning, growing, and making progress toward something better.
Take your first—or next—step below:
- Newly Diagnosed
- Diagnosis & Treatment Guidelines
- Comorbidities
- Genetics
- Patient Stories
- Clinical Trials and Pipeline
- Biennial Conference & Day of Dravet Workshops
- Fundraising
- Other Resources
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