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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]

Our Impact

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 our community’s combined efforts, DSF has many accomplishments to be proud of. Join #TeamDSF by making a donation, starting a personal fundraising campaign, or setting up a social media fundraiser this year.

Dravet Stories

These Dravet syndrome families have a lot to share. Read about their journeys and advice. Read more Dravet stories here

We're Here To Help You

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

DSF offers many resources for parents and caregivers including brochures, educational webinars, a bi-annual conference and videos. We also offer support groups and programs for families and siblings and patient and caregiver connect 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 bi-annual 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

Transitioning to Adulthood for Patients with Dravet Syndrome

When Dravet syndrome (DS) was first discovered by Dr. Charlotte Dravet in 1978, there was not a clear understanding of the expected lifespan for someone …

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Stiripentol (DIACOMIT): History and New Expanded Approval

In July of this year, the US Food and Drug Administration (FDA) authorized the use of stiripentol (DIACOMIT) for patients with Dravet syndrome aged 6 …

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DSF Strategic Plan Update

Much has changed in the field of Dravet syndrome since the inception of DSF in 2009. In 2018, DSF debuted its 5-year strategic plan to …

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