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Decoding Dravet Blog

Helping you to learn about the past, present, and future of Dravet syndrome and the Dravet Syndrome Foundation. The Decoding Dravet Blog will keep you up to date on current research, treatment options, advocacy efforts, community activities, and other topics that are important to the Dravet syndrome community.

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Unite Us – a New Program for Patient Families

DSF is excited to announce our partnership with the Child Neurology Foundation and Unite Us, the nation’s leading technology company connecting health and social care services, to launch a new program that will connect families in the Dravet syndrome community to vital resources. Intended to fill a gap reported by families, this partnership is a …

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DSF is hiring!

A signal of our organization’s growth and success is our need to add two new staff members to our team. We are excited to announce we are accepting applications for an administrative assistant and a fundraising assistant. Are you an administrative and/or fundraising professional with a passion for helping the Dravet syndrome community and making …

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Updated Professional Education Video Series

National Epilepsy Awareness Month in November is an annual event that teaches people about epilepsy’s causes and symptoms. During this month, many organizations join together to provide information about prevention, treatment, research, and resources to fight epilepsy. DSF takes this opportunity each year to highlight Dravet syndrome and the complexities of this severe form of …

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Genetic Therapy for Dravet Syndrome: 2022 State of the Field

When the Dravet Syndrome Foundation was established in 2009, there were no specific treatments for patients with Dravet syndrome and limited guidelines on best treatment approaches. Despite the known genetic cause for the majority of cases, mutations in SCN1A, the idea of a genetic-based therapy seemed a distant possibility at that time. Things have changed …

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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 diagnosed with DS. Earlier diagnosis and advances in treatment have improved the prognosis and life expectancy of DS, meaning that more than 80% of patients will survive beyond the age …

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