All Resources
Family & Sibling Kits
Our VIP Family & Sibling Kits are designed to support families as they navigate their own emotions, questions, and experiences....
Transitioning to Adulthood With PCDH19 Epilepsy
When your child has significant health & support needs, every approaching transition can feel daunting, but the transition to adulthood...
My Perspective: Growing Up With PCDH19 Epilepsy
Many people think that having a seizure disorder like PCDH19 merely means that you occasionally have seizures. However, the reality...
Because of Elliot: An Adult Sibling’s Reflection on Growing up with a Brother Who Has a Rare Disease
When you are trying to get to know someone new on a deeper level, there are probably a few things...
Standing by our Sister: The Sibling Impact of PCDH19
We can’t imagine our family’s life without Norah. Norah was diagnosed with PCDH19 Epilepsy at only 9 months old. She...
The cure is out there. Help us find it.
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