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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 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

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 …

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COVID-19 Vaccination and Dravet Syndrome

In 2020 the COVID-19 pandemic completely disrupted the lives and health of the United States and the world. The development of vaccinations against COVID-19 were …

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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 …

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Upcoming Events

Want to get involved? Join an Event? Host an Event? There are so many ways you can support DSF! View all of our upcoming events here

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