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What We Accomplished Together in 2022

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 companies, as well as academic researchers and clinicians, about the challenges that individuals living with Dravet syndrome face daily. A Voice of the Patient Report was developed from this meeting.  

In June, we launched our new website and new branding, as well as held our 5th biennial conference in collaboration with Cook Children’s Medical Center in Fort Worth, Texas. The event brought together over 300 family members, researchers, clinicians, and industry partners to hear the latest on research and clinical care for Dravet syndrome, as well as for the unique opportunity to connect in person for the first time since the pandemic.

In December, DSF hosted our Research Roundtable, a vibrant scientific program with over 180 attendees composed of researchers, clinicians, and industry members. At the meeting, we also announced our five new research grant awardees, totaling $705,000. You can read about our many more initiatives and successes in 2022, including a full update on our research accomplishments and strategy in the final report from our 5-year strategic plan at this link.  

None of this would have been possible without your valuable participation and support. Be sure to continue to engage with the foundation in whatever way that you can – we believe there is no limit to what our community can accomplish in 2023.

Wishing you and your family a happy and prosperous New Year!

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