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.
DSF will be hosting monthly online sessions to offer caregivers the opportunity to connect and engage with peers, to support one another, as well as to ask questions of DSF and its staff. We know that exposure to stories, insights, and information sharing is particularly helpful when you are caring for someone with Dravet syndrome. […]
A diagnosis brought us together. Our hearts keep us together. Read More »
Do you own a business or work for a national company that would benefit from national attention, while supporting the Dravet syndrome community? Corporate donations to nonprofit organizations such as DSF provide companies with a way to give back to the community, engage their employees, and improve brand perception. There are many ways that a
Use Your Connections to Help DSF! Read More »
In a recent Decoding Dravet post, we took a moment to highlight fathers and father-figures in our community. During the Day of Dravet workshops, DSF brought together a small group of Dravet Dads to have a heartfelt conversation about their unique experiences. The feedback from that session was so overwhelmingly positive that DSF proposed an
Dads’ Meetup Registration Read More »
DSF started as a small, volunteer-led group in 2009 and has grown into a professional organization that serves patient families, healthcare professionals, researchers, industry partners, and other stakeholders in the Dravet syndrome community. In addition to offering resources, education, and support to patient families, we are the largest non-governmental funder of Dravet syndrome-specific research and
Join us in welcoming our new staff members! Read More »
Together, the Dravet syndrome community managed to accomplish some pretty amazing things in 2022. The year started off with our virtual Externally-Led Patient-Focused Drug Development meeting on Dravet syndrome in February. This meeting was a long-awaited opportunity for the Dravet syndrome patient community to educate representatives of the Food and Drug Administration (FDA) and pharmaceutical
What We Accomplished Together in 2022 Read More »
As we close out the year, we wanted to send our holiday wishes to our amazing community!
Happy Holidays from DSF! Read More »
What is on your agenda today? How about finding a cure for Dravet syndrome? At the Dravet Syndrome Foundation (DSF), that is on our agenda every single day. We invite you to donate again and be part of that effort to create a cure or therapy that enhances the quality of life for people with
2022 DSF Annual Campaign Read More »
The American Epilepsy Society 2022 Annual Meeting took place in Nashville, Tennessee on December 2-6. This meeting is packed with academic scientists, expert clinicians and health care providers, pharmaceutical and biotechnology companies, and advocates all gathering to share updates in the field of epilepsy and hold thought discussions regarding where we have come and what
2022 American Epilepsy Society Meeting: A Dravet-focused Recap Read More »
DSF was established with a primary mission focused on advancing research. One way in which DSF works toward accomplishing this mission is through our yearly grant funding cycle, which has directed over $5.6 million to Dravet-focused research since 2009. This year we announced at our annual Research Roundtable that we are funding an additional 5
DSF Announces 2022 Grant Awardees Read More »
We are grateful for our community this Thanksgiving. Our patient families, leaders, staff, clinicians, researchers, and industry partners make what we do every day possible. And for that, we are immensely thankful. For Our Board, Staff, and Volunteers: We are grateful to our many leaders who have shown up for our community – online and
With Gratitude this Thanksgiving Read More »
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