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.