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Planning for Long Term Care and Medical Transition
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
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
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
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
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 ...
How Might the Budget Reconciliation Bill (HR 1) Affect Families Living with Dravet Syndrome?
With the recent passage of HR 1 by Congress, rare disease communities – including Dravet syndrome – are seeking clarity on how the new legislation ...
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