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What is Dravet Syndrome?

Dravet syndrome, also known as Severe Myoclonic Epilepsy of Infancy (SMEI), is a rare form of intractable epilepsy that begins in infancy and proceeds with accumulating morbidity that significantly impacts individuals throughout their lifetime. It has an estimated incidence rate of 1:15,700. [1]

Community. Research. Progress.

Raising Hope & Changing Lives through Research

The mission of Dravet Syndrome Foundation (DSF) is to aggressively raise funds for Dravet syndrome and related epilepsies; to support and fund research; increase awareness; and to provide support to affected individuals and families.

We know that the fight against Dravet syndrome will never be successful without teamwork. None of us can do this alone and to achieve great things we must work together.

Thanks to the collective efforts of our community, DSF has achieved numerous milestones to celebrate. Become a part of #TeamDSF by donating, launching a personal fundraising campaign, or exploring other ways to give.

We're Here To Help You

We offer a wide variety of resources for caregivers and medical professionals

DSF provides a variety of educational resources for patient families:  brochures, educational webinars, a biennial conference, and videos. We also offer support groups and advocacy programs, as well as patient and caregiver grants.
 

DSF is dedicated to funding the highest caliber research on Dravet syndrome and associated epilepsies. Our focus is on research projects that will find new treatments and improve the quality of life for those living with an ion channel epilepsy.

DSF offers many resources and educational materials for neurologists serving our Dravet community including a biennial conference, diagnostic considerations, information on new FDA-approved medications, and seizure rescue action plans.

DSF Recent News & Information

Keep up to date on current information in our Decoding Dravet Blog, our DSF Research Review on our news page

Zorevunersen (STK-001) FAQs: Spotlight on the Upcoming Phase 3 Studies

This is an exciting time for the Dravet syndrome community. The first potentially disease-modifying treatment targeting the genetic cause of Dravet syndrome has completed initial ...
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CareCompass: A New Resource to Navigate Caregiving

DSF is pleased to share information about a new free platform developed by UCB, with input from the Dravet syndrome and Lennox-Gastaut syndrome patient communities: ...
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Dravet Syndrome Community Participates in Rare Disease Week on Capitol Hill

Several members of the Dravet syndrome community went to Washington, D.C. last week (February 24-26, 2025) to participate in Rare Disease Week on Capitol Hill. ...
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