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]

$ 9.1 M+

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.

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 biennial 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 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

DSF-Funded Clinico-Genomics Research Study Now Recruiting for Remote Participants

At the end of 2023, DSF announced our largest-ever grant award in the amount of $1 million directed to Ingo Helbig, MD and Ethan Goldberg, ...
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Chat & Connect

DSF hosts monthly online sessions to offer caregivers the opportunity to connect and engage with peers, to support one another, as well as to ask ...
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Encoded Therapeutics begins enrolling first in-human trials for ETX101, a potential one-time, disease-modifying gene regulation therapy for SCN1A+ Dravet syndrome

2024 is proving to be a promising year for the advancement of targeted therapies for Dravet syndrome, including some newly enrolling clinical studies to investigate ...
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