Supporting Your Families with Rare Epilepsy VIP Siblings
Resources for Patient Organizations
The VIP Sibling Project offers a variety of free online materials, many downloadable, for patient organizations to offer their families. Some items are digital versions of contents in the VIP Sibling Kits and Parents & Caregivers Kit.
Parents & Caregivers Guide
Educates parents and caregivers on the impact of a rare epilepsy on siblings, shares learnings from the Sibling Voices Survey, and offers ideas to deepen communication with VIP siblings.
Love Notes
Helps parents and caregivers show appreciation and love to their children without a rare epilepsy. It’s easy to drop an encouraging note into a lunch box or book bag to brighten your child’s day.
My Family Is Living with a Rare Epilepsy Form
Intended for teachers or other key persons in your VIP sibling’s support circle, this form explains the impacts of living with a rare epilepsy on your child, and how the recipient can offer support and encouragement.
VIP Sibling Seizure Plan Form
It’s important to figure out what role works best for your VIP sibling to make sure they’re comfortable during a medical emergency. Use this form to guide those conversations and make a plan that’s right for your child.
Coloring Journal (Ages 4-10)
Positive messaging and thought-provoking, age-appropriate prompts encourage VIP siblings to express themselves through this fun and colorful journal.
My Sibling Is Special Book
A comforting story you can read with your young VIP sibling to help them understand and cope with living with a brother or sister who has a rare epilepsy.
Journal (Ages 11-18)
Positive messaging and thought-provoking, age-appropriate prompts encourage VIP siblings to express themselves through this fun and colorful journal.
Sibling Voices Survey Infographic – Parent Version
Summary of learnings from the Sibling Voices Survey research project.
Sibling Voices Survey Infographic – Sibling Version
Summary of learnings from the Sibling Voices Survey research project, created for VIP siblings to reassure them that they are not alone.
“Psychosocial Impact on Siblings of Patients with Developmental and Epileptic Encephalopathies”
Full Sibling Voices Survey research results, published in the journal Epilepsy & Behavior.
