DSF & Dravet Syndrome News
Keep up to date on current information in our Decoding Dravet Blog, our DSF Research Review and our monthly News & Notes.
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Sibling Companion Guide for the C.A.R.E. Binder
August 29, 2025
Over the past three blog posts (Week 1, Week 2, and Week 3), we’ve explored how the C.A.R.E. (Caring for Adults with Rare Epilepsy) Binder ...
Planning for Long Term Care and Medical Transition
August 22, 2025
In our last two blog posts (Week 1 and Week 2), we’ve explored how the C.A.R.E. (Caring for Adults with Rare Epilepsy) Binder can support ...
Taking a Deeper Dive into Transition Planning
August 15, 2025
In last week’s blog post, we introduced the C.A.R.E. (Caring for Adults with Rare Epilepsy) Binder and how it can help with transition planning. In ...
Longitudinal Dravet Syndrome Natural History Study
August 14, 2025
Kelly Knupp, MD – Children’s Hospital Colorado Longitudinal Dravet Syndrome Natural History Study Special Project Funding: 3 years – $662,231 Grant Summary from the Investigators: ...
Identification of Behavioral Biomarkers in Children with DS: A Pilot Study
August 14, 2025
Ivan Soltesz, PhD – Stanford University, Jack Parent, MD – University of Michigan, Julie Ziobro, MD, PhD- University of Michigan and Tilo Gschwind, PhD- Stanford ...
Getting Started with Transition Planning
August 8, 2025
With the constant care demands of your loved one with Dravet syndrome, it’s understandable that transition planning might not even be on your radar. Transitioning to ...

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