Planning long-term care for a loved one with rare epilepsy or a developmental and epileptic encephalopathy (DEE), such as Dravet syndrome, can sometimes feel overwhelming. It’s natural to experience concern or anxiety as you plan for their future. Recently, DSF had the opportunity to work with UCB, along with the LGS Foundation, TSC Alliance, and others to help develop the C.A.R.E. (Caring for Adults with Rare Epilepsy) Binder.
This new resource is designed to help you approach this process with the confidence that, even though it may seem like you’re navigating this new phase of your family’s rare epilepsy journey alone, you are not. It empowers the primary caregiver to compile all the necessary information for a smooth transition of care, both now and in the future. By organizing key details in areas such as medical, financial, legal, residential, and other important services, it provides peace of mind for caregivers and their loved ones.
The C.A.R.E. Binder is an interactive, fillable PDF that allows you to enter, download, save, and print your information. This tool helps you gather crucial details to create a future care plan for your loved one with Dravet syndrome, which can be shared with siblings or other adults involved in their daily care. Click on this link to learn more and get started!
VIPrareCARE.com and the C.A.R.E. Binder were proudly developed in collaboration with the Dravet Syndrome Foundation, Lennox-Gastaut Syndrome Foundation, TSC Alliance, and other organizations who support families like yours and was made possible through UCB funding and partnership. We’d love to hear your feedback on the C.A.R.E. Binder. Please click here to share your insights
