Rare Epilepsy

Siblings, Supported.

Welcome to VIPsibling.eu where parents and caregivers will find online resources available to help you support your VIP sibling.

Parents / CaregiversPatient OrganisationsSiblings

VIP siblings are siblings who have a brother or sister with a rare epilepsy. They are often unselfish, dedicated, and demonstrate an amazing ability to see beyond the challenges, exhibiting understanding and compassion beyond their years.

But they need our support.

That’s why we collaborated with 10 dedicated patient organisations of the rare epilepsy community to create special resources–available as digital downloads. Jump in and start exploring or scroll down to learn more about the VIP Sibling Project.

The VIP Sibling Project

Thank you to the 10 patient organisations who generously volunteered their time, expertise and ideas to the VIP Sibling Project.

Read more about our incredible journey together.

Dup15q Alliance
Lennox-Gastaut Syndrome Foundation
PCDH19 Alliance
DEE-P Connections
SLC6A1 Connect
International Foundation for CDKL5 Research
Dravet Syndrome Foundation
International SCN8A Alliance
Doose Syndrome Epilepsy Alliance
TSC Alliance
When our son was diagnosed with a rare epilepsy, his three older brothers were greatly impacted. I searched for resources and support for them, but the local sibling events were difficult to fit into our schedule. The VIP kit is JUST what I needed: Information for me to better understand the disease and impact on the family, as well as tools to allow my children to process on their own.a rare epilepsy parent