VIP Siblings and Caregiver Kits

KCNT1 siblings have a different childhood experience compared to their peers, and we recognize that they need support as well. They may be anxious about what their sibling is going through, have a hard time adapting to their changing routines, and they may feel neglected because their parent’s time is limited while caring for their KCNT1 warrior.

What can we do about it?

We are offering new resources to support siblings and their families: Caregiver & Sibling VIP Kits!

Thanks to UCB, we are able to provide these resources absolutely free to families in our community. Read below about this resource and how these kits can be a valuable resource for KCNT1 siblings and caregivers. Follow the links to complete the order form & receive your kit!

*Must reside in the United States to receive a support kit in the mail. Download options are available at the bottom of the page!

Get your VIP Caregiver and Sibling Kits Today!

VIP Sibling Kit Ages 4-10

Learning about a rare epilepsy isn’t easy for younger siblings. When their sibling has a seizure or other emergency, they may scared or worried. This special VIP Sibling Kit was created to assure them that having different emotions is okay and helps celebrate how important and loved they are. 

THIS KIT INCLUDES:

  • My Sibling Is Special Book 

  • Coloring Journal

  • Family Journal

  • Mood Stickers

  • Rockin' it / Rough Day Wristband

  • Plush Star

VIP Sibling Kit Ages 11-18

Your older VIP siblings may feel like nobody else their age has to cope with the kinds of challenges they do having a sibling with a rare disease. Designed to reassure your VIP sibling that their thoughts and feelings are normal, this special VIP Sibling Kit provides encouragement and insight from other rare epilepsy siblings.

THIS KIT INCLUDES:

  • Sibling Journal 

  • Family Journal

  • Rockin' it / Rough Day Wristband 

  • Door Hanger​

Parents & Caregivers Kit

The Parents & Caregivers Kit was created based on research, guidance, and inspiration from patient organizations in the rare epilepsy community, health care and mental health experts specializing in rare seizure disorders. We hope it can offer support and resources for families who are impacted by rare epilepsies.

THIS KIT INCLUDES:

  • Guide

  • Love Notes

  • My Family Is Living with a Rare Epilepsy Form 

  • VIP Sibling Seizure Plan Form

Located outside of the United States? Or prefer a digital?

Use the links below to access a variety of free online materials from the kits for KCNT1 siblings, many downloadable, and resources to inform and support parents & caregivers of rare epilepsy VIP siblings.

VIP Sibling Kits are made available to families at no charge, thanks to support by our partners at: