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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Building Your Child’s Team of Medical Professionals

For many years, patients and families affected by Dravet syndrome (DS) felt alone and unheard. They struggled finding medical specialists who could not only recognize and diagnosis the disease, but also knew the best ways to approach treatment. Thanks to advancements in the last decade in the understanding of DS, there has been significant progress […]

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The Importance of Fundraising for Research

Dravet Syndrome Foundation (DSF) offers programs that bring great value to the Dravet community through three primary pillars – Research; Professional Education; and Caregiver & Patient Support. Our community has done many important things that have helped to move the field forward. DSF’s grant program has awarded over $4.1M through 43 research projects. Thanks to

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Why You Should Be Wary of Online Health Information

The advent of the internet has been of considerable benefit to rare disease patient communities, including the Dravet syndrome (DS) community. It has given patient families the opportunity to easily connect; to find out about the latest in research, treatments, and clinical trials; and to locate medical specialists who are familiar with their disease. A

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The Power of a Connected Community & Industry Partnerships

Early in the development of DSF we could see that community connections, strategic alliances, and partnerships would be critical. As Paul Ryan said, Every successful individual knows that his or her achievement depends on a community of persons working together. By partnering up, we were able to not only produce meaning and value, but we

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