jezo sywulka Thanks to the collaboration with UCB and more than 10 rare epilepsy advocacy groups, we are now able to provide new resources to support siblings and their families.

Specially tailored for both younger and older siblings of children living with rare epilepsies, the tools are designed to help siblings express and talk about their feelings with peers and the adults around them. These kits also allow for the adults to talk to the siblings in their lives.

There are also resources for parents, helping them to recognize when their child may be struggling and to find ways to show the siblings that they are special, loved, and appreciated.

These resources were developed in response to the needs of the community and in response to insights uncovered by the Siblings Voices Study, a published study that assessed the emotional impact of growing up with a sibling with a Developmental and Epileptic Encephalopathy.  Developmental and Epileptic Encephalopathy (DEE) refers to a group of severe epilepsies that are characterized both by seizures, which are often drug-resistant, as well as encephalopathy, which is a term used to describe significant developmental delay or even loss of developmental skills.

VIP Sibling

As part of the VIP Sibling Collaboration Team, we have developed three special kits based on research, expertise, and lots of community input, including from VIP siblings. Check out the kits that interest you below and order them by mail or use the Resources tab to download today.


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Siblings Ages 4-10

Learning about dup15q syndrome and 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
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Siblings 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 dup15q syndrome. 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
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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 (available for download only at Tools & Resources)
  • VIP Sibling Seizure Plan Form (available for download only at Tools & Resources)
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Downloadable Resources

The VIP Sibling Project offers a variety of free online materials, many downloadable, to inform and support parents & caregivers of rare epilepsy VIP siblings. Some items, just for siblings, are digital versions of VIP Sibling Kit contents.

Supported by:

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