This interactive, fillable PDF resource has been created to support families as they begin to work through long‐term adult care planning for their loved one with a rare epilepsy. It can guide you through some of the challenges families face as their loved one ages into adulthood.
There are resources available to you such as patient organizations who offer many types of support services, including connecting you with other patient families who have gone through this process. Rare patient organizations like the Dravet Syndrome Foundation, Lennox‐Gastaut Syndrome (LGS) Foundation, TSC Alliance, and others provide a lifeline to families in their communities.
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.
