Find Support
We believe that research is our greatest hope, and we also believe that supporting children and families suffering today is our duty.
See the many ways our community can provide support.
Join the Alliance
Becoming a member of the PCDH19 Alliance is free, easy, and open to anyone impacted by PCDH19, including parents, caregivers, siblings, family members, clinicians, researchers and individuals living with the condition. There are no obligations or requirements, just a supportive space to connect and learn.
Ask the Alliance
Our Ask the Alliance program offers families a direct, personal way to get the support you need as you navigate a PCDH19 diagnosis. By scheduling a one-on-one call with Julie, a fellow parent and advocate, families can ask questions, share concerns, and receive guidance from someone who truly understands. Whether you’re feeling overwhelmed, looking for resources, or simply need someone to listen, we’re here to chat.
Parent Support 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 engage with others who get it.
Patient Assistance Grants
PCDH19 offers Patient Assistance Grants to help ease the financial strain associated with getting treatment and equipment for PCDH19.
Virtual and In-Person Events
Join an upcoming event to learn from experts and build lasting relationships.
PCDH19 Professional and Family Conference
The PCDH19 Professional and Family Conference brings together families, researchers, clinicians, and advocates from around the world to share knowledge, support, and hope. Held every other year, the conference offers a unique opportunity to learn about the latest in PCDH19 research and care, hear from experts, and connect face-to-face with others on a similar journey.
Resource Library
We curate a collection of tools, guides, and information designed to help you understand and navigate PCDH19. From medical information and education strategies to links to trusted organizations, you’ll find reliable, practical support in one place.
Family & Sibling Kits
Our VIP Family & Sibling Kits are designed to support families as they navigate their own emotions, questions, and experiences....
Epilepsy & Special Needs Organizations
Explore these organizations and tools for more epilepsy resources: Seizure Tracker Epilepsy Therapy Project CURE Citizens United For Research in...
Grants For Equipment & Service Dogs
Check out these organizations if you’re looking for grants for equipment and service dogs: The Chelsea Hutchinson Foundation The Danny...
How Can We Help?
Whether you’re newly diagnosed or looking for specific guidance, we are here to help you feel informed and empowered every step of the way. Reach out and let us know how we can help.