Transition of Care Resources

The C.A.R.E Binder is a resource for families who are Caring for Adults with a Rare Epilepsy.

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.

Epilepsy Alliance America, in partnership with Epilepsy Advocacy Network, hosted a webinar: Transition of Care.
The panelists discussed how to care for your child with epilepsy as they transition from pediatric to adult medical care, as well as other potentially complex legal issues such as Social Security and Guardianship / Trusts.  Caregivers of individuals with epilepsy provided their personal experiences going through the transition of care process for their own children.