Parent Resources
Navigating Life with a Child Diagnosed with PCDH19 Epilepsy
We offer a wide range of resources for parents of child diagnosed with PCDH19 Epilepsy. We’re here to provide both practical help and emotional support. Whether you’re looking for answers, connection, or encouragement, our resources are designed to meet you where you are and walk with you every step of the way.
Support for Parents
The PCDH19 Alliance offers several options for support including our parent support group, patience assistance grants, events and online resources.
Join our Parent Facebook Group
The PCDH19 Alliance moderates a private support group on Facebook for parents and caregivers of loved ones with PCDH19 Epilepsy. This group is a great resource for families to ask questions and find support.
Ask the Alliance
With our Ask the Alliance program, parents have a direct, personal way to get support from someone who understands. In a one-on-one call with Julie, a fellow parent and advocate, you can ask questions, share concerns, and receive guidance.
Email Julie at julie@pcdh19info.org to schedule a call.
Patient Assistance Grants
Our Patient Assistance Grant program provides financial support to individuals and families affected by PCDH19 who are facing urgent or uncovered medical expenses.
Family & Sibling Kits
Our Family and VIP Sibling Kits are designed to support brothers and sisters as they navigate their own emotions, questions, and experiences. Each kit includes age-appropriate tools and activities to help siblings feel seen, valued, and better equipped to understand what their family is going through. It’s one small way we honor the important role they play and remind them they are Very Important People, too.
Kits were developed by the VIP Sibling Collaboration Team for rare epilepsy families based on research, expertise, and community input. Thanks to UCB, we are able to provide these resources absolutely free to families in our community.
You are not alone.
Whether you’re facing a new diagnosis or you’ve been dealing with PCDH19 for years, we’re here to offer you support. We are stronger together.
