Starting out as the Health Equity Coordinator for the Dravet Syndrome Foundation (DSF), I knew I wanted DSF to be a place where everyone belongs and feels accepted, no matter where you come from or what language you speak. As a parent of a daughter with Dravet syndrome myself, some of the most cherished friendships […]| Dravet Syndrome Foundation
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 can support you in preparing for your loved one’s transition to adulthood and in planning for their long-term care needs. In our final week, I’m excited to introduce a new […]| Dravet Syndrome Foundation
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 you in preparing for your loved one’s transition to adulthood and planning for their long-term care. This week, we’re focusing on some key information you’ll want to start documenting when […]| Dravet Syndrome Foundation
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 this week’s blog, we’re diving into how to get started with the C.A.R.E. Binder, along with the next steps to help you make the most of it. When beginning the […]| Dravet Syndrome Foundation
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 adulthood is a complex, often overwhelming, and deeply emotional process. The journey can look very different from one household to the next, as each young adult’s abilities, needs, and future […]| Dravet Syndrome Foundation
With the recent passage of HR 1 by Congress, rare disease communities – including Dravet syndrome – are seeking clarity on how the new legislation may impact their loved ones and families, particularly in areas such as access to care, insurance coverage, and treatment affordability. One of the programs most impacted from these major policy […]| Dravet Syndrome Foundation
We are excited to announce that DSF is launching its first Community Book Club and we can't wait to share this experience with you! The book club will be led| Dravet Syndrome Foundation
I became involved with the Dravet Syndrome Foundation (DSF) to find a sense of control where there was none. Being active and trying to be part of a solution| Dravet Syndrome Foundation