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.
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.
Resources for Parents
Explore our resources for more information on PCDH19 including our educational and support videos.
My First 18 Months as a PCDH19 Dad
What is PCDH19? I remember asking this question over and over when we received the diagnosis for Louie. I always...
PCDH19 Moms
Moms of kids with PCDH19 are often fierce advocates, medical managers and public educators. First and foremost though, we are...
Dear Parent: It’s OK to be where you are.
When my daughter received her diagnosis of PCDH19, I fell apart. I had days when I couldn’t get out of...
Another Year in Holland: Life as a Parent of a Child with PCDH19
The decorations are put away, the ball has dropped, kids are heading back to school and parents around the world...
Finding Hope: Parenting a Child with Life-threatening Epilepsy
On the first morning of our much-anticipated annual family vacation, my 11-year-old daughter Emily learned that a beloved Disney actor...
On Becoming an Epilepsy Advocate
Years ago, when we were just starting on our journey with PCDH19, someone suggested that I work to raise awareness...
PCDH19 at School
Learn more about IDEA, the Individuals with Disabilities Education Act (IDEA), and how you can get your child evaluated for special education and a behavior intervention plan (BIP).
PCDH19 Epilepsy at School: Resources
Check out these resources for equipping students with PCDH19 Epilepsy to thrive at school....
PCDH19 at School: Guide to IDEA, BIPs & Section 504
Making sure your child or family member with PCDH19 is adequately cared for while at school can seem daunting. Our guide will help you better understand your options for getting support at school...
Preparing for Another School Year with Epilepsy: 5 Tips to Make This Your Best Year Yet
In the next few weeks, many of our kids will be heading off to school. This can be a stressful...
Meet the Student: Classroom Introduction for Children with PCDH19 Epilepsy
Learn more about how to best support a student with PCDH19 Epilepsy in the classroom. This customizable introduction letter helps...
Supporting Students with PCDH19 Epilepsy: A Guide for Schools and Educators
Learn more about how PCDH19 Epilepsy can affect students in the classroom and how schools can provide individualized support. This...
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.
Join the Alliance
Joining the PCDH19 Alliance is simple and free. There are no obligations, just a welcoming community where you can learn, connect, and find support.