Welcome to the C.A.R.E. Binder, a resource for families who are Caring for Adults with a Rare Epilepsy.

Long term planning for care for your loved one with rare epilepsy or a developmental and epileptic encephalopathy (DEE), such as Dravet syndrome, may feel daunting at times. If you have feelings of concern or anxiety as you prepare for your loved one’s future, rest assured, this is normal. These resources were created to help you approach the task with the reassurance that while it may feel like you are on your own during this next phase of your family’s rare epilepsy journey, you are not alone.

What the C.A.R.E. Binder addresses:

Transitioning your loved one from the pediatric care setting to adult care providers
Planning for long‐term care after age 22 and beyond as your loved one ages
Planning for the time when you are no longer able to provide primary care giving for your loved one

How does it work?

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 care.

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.

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.