In the rare disease world, siblings may experience just as much difficulty as their afflicted brothers or sisters. Parents and guardians expend an incredible amount of time and energy on ensuring their rare disease child attends therapies and doctor’s appointments, all while researching the specific disease and maintaining the household. As expected, these non-SLC6A1 siblings might be confused, scared for their brother/sister, and shuffled around between numerous medical obligations. We at SLC6A1 Connect understand just how important it is for these SLC6A1 siblings to obtain the resources and tools they need to navigate this uniquely difficult situation.

In 2020, a research study was published that scientifically details these sibling difficulties. Called the Sibling Voices Survey, this study included parents and siblings (ages 9+) from the rare epilepsy community. The full published research results can be found here, and an infographic summary that can be shared with siblings can be found here.

We’ve teamed up with nine other rare epilepsy organizations and UCB to create support kits for our SLC6A1 siblings- they are our VIP Siblings! We’re thrilled to have this opportunity to support them. Fill out the form below if you would like your VIP siblings to receive a care package to brighten their day. 
Siblings can receive their very own special VIP Sibling Kit. The purpose of the kit is to remind siblings how important they are, support them, and provide simple communication tools that let those around them know how they’re feeling.


Parents & Caregivers Kit

The Parents & Caregivers Kit was created based on research, guidance, and inspiration from patient organizations in the rare epilepsy community and from HCP 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. Here’s a peek at what’s included in this kit-by-mail.

  • ​Guide
  • Love Notes
  • My Family Is Living with a Rare Epilepsy Form 
  • VIP Sibling Seizure Plan Form

Ages 4-10

Learning about a rare epilepsy isn’t easy for younger siblings. When their brother or sister has a seizure or other emergency, they may feel a little scared or worried. This special VIP Sibling Kit was created to assure them having different emotions is okay and helps celebrate how important and loved they are. Here’s a peek at what’s included in this kit-by-mail:

  • My Sibling Is Special Book
  • Coloring Journal
  • Mood Stickers
  • Rockin’ it / Rough Day Wristband
  • Plush Star

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 brother or sister with a rare epilepsy. Designed to reassure your VIP sibling that their thoughts and feelings are normal, this special VIP Sibling Kit also provides encouragement and insight from other rare epilepsy siblings. Here’s a peek at what’s included in this kit-by-mail:

  • Journal
  • Rockin’ it / Rough Day Wristband
  • Door hanger

*Kits may only be delivered within the US. Many of the assets are available online for those who would like to view and print here.

This program is proudly sponsored by:

%d bloggers like this: