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.

Join the Alliance

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.

Request a Call

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.

Request Access

Patient Assistance Grants

PCDH19 offers Patient Assistance Grants to help ease the financial strain associated with getting treatment and equipment for PCDH19.

Learn About Grants

Virtual and In-Person Events

Join an upcoming event to learn from experts and build lasting relationships.

View Event Calendar

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.

About the Conference

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.

Contact Us