DEE-P Connections is pleased to be able to distribute both parent and sibling kits to families with a child with a rare epilepsy.
Families must be a member of the DEE-P Family Community - Sign up HERE [link to DEE-P Sign Up on Home Page or within in the form below. For updates on new programming, “Like” our public DEE-P Connections page.
Families with Dravet, Dup15Q, Doose, CDKL5, LGS, PCDH19, SLC6A1, and TSC are encouraged to apply through those organizations, which are also authorized distributors. Links are available МОНДА.
For now, kits are only available to families in the U.S. but many of the contents are available for download МОНДА
Requests are bundled for shipping twice a month - so we apologize that there may be a lag between entering your request and receiving your kits.
This program is sponsored by:
More On The Kit Contents
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 health providers and mental health experts specializing in rare seizure disorders. We hope these 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 for parents on supporting rare epilepsy siblings
- Love Notes to share with your child(ren)
- 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 | UCB VIP Siblings)
VIP Sibling Kits, 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 scared or worried. This special VIP Sibling Kit was created to assure them having a wide range of 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
VIP Sibling Kits, 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 valid, 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
"Wow, they send these out to siblings like me? I must be doing a really good job."
- Zachary, VIP sib to Yanni
What families are saying about the kits...
Christal, Zachary and Yanni's mom, shares:
"Thank you for making Zachary feel special. He has already used his bracelet to let me know that he was feeling a little down and needed my attention. We read the story and he can relate so well to the sibling in the book. The coping strategies are also really helpful.
I think his smile says it all :)."
Order Your Kits Here!
Хосусыйлык турында белдерү
Без сезнең хосусыйлыгыгызның мөһимлеген таныйбыз. Безнең хосусыйлык аңлатмасы бу вебсайтны кулланганда без алган һәм туплаган шәхси мәгълүматның төрләрен, шулай ук мәгълүматны саклау өчен кайбер адымнарны күрсәтә. Зинһар, монда күбрәк укыгыз.