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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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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 months and older and taking clobazam (1). Previously, stiripentol was approved for patients aged 2 years and older in the US, which meant there could be a delay in access …

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Preclinical Development of a Gene Therapy for Dravet Syndrome

A recent publication from Tanenhaus et al details the preclinical work by Encoded Therapeutics that has led to the development of a potential gene regulation therapy for Dravet syndrome. The study, published in the journal Human Gene Therapy in June, shows proof-of-concept that their approach, ETX101, can be delivered to the correct cells in the …

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Dravet Syndrome Voice of the Patient Report

DSF has released its Dravet Syndrome Voice of the Patient report, summarizing outcomes from a February 2022 Externally Led Patient Focused Drug Development (EL-PFDD) meeting. For the first time ever, parent caregivers and family members were able to share the lived experience of patients living with Dravet syndrome. Parent caregivers and family members shared riveting stories …

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2022 DSF Family & Professional Conference Recap

The Dravet Syndrome Foundation (DSF) held a Family & Professional Conference in Fort Worth, Texas on June 23-25 of 2022 in collaboration with Dr. Scott Perry and Cook Children’s Medical Center. DSF generally holds these conferences every 2 years, although due to the COVID-19 pandemic, there has not been an in-person conference since 2018. Needless …

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