Resources
PCDH19 Resources for Clinicians
If you’re a neurologist, pediatrician, therapist, direct support professional, educator, or healthcare provider working with individuals affected by PCDH19, your role is essential. Early diagnosis, informed care, and day-to-day support can make a life-changing difference for individuals and families living with this condition.
Educational Resources
We are committed to equipping professionals with the information and insights needed to deliver informed, compassionate care.
Understanding PCDH19 Epilepsy: A Guide from the PCDH19 Alliance
Learn more about the mission and impact of the PCDH19 Alliance—a volunteer-run organization dedicated to supporting families affected by PCDH19...
Kelly Weatherwax, MS, SLP-CCC: Neurodiversity Affirming Practices
Learn more about neurodiversity-affirming practices in speech therapy with Kelly Weatherwax, MS, CCC-SLP, from The Helix School in Marin. In...
Behavior in Epilepsy, Getting a Proper Diagnosis
Learn more about an integrated care model for children with epilepsy, including those with PCDH19, presented at the 2018 PCDH19...
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...
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...
How do PCDH19 Mutations Affect Brain Development?
Learn more about the PCDH19 Registry, presented at the 2018 PCDH19 Epilepsy Professional and Family Symposium. This session offers an...
PCDH19 Professional and Family Conference
The PCDH19 Professional and Family Conference is a unique opportunity for clinicians, educators, and support professionals to deepen their understanding of PCDH19-related epilepsy while connecting directly with the families they serve. If you’re looking to expand your knowledge, build meaningful connections, and be part of the effort to improve care, this is a can’t-miss event.
Stories from the PCDH19 Community
Meet families and individuals impacted by PCDH19 to get a powerful glimpse into the real-life experiences behind the diagnosis.
A hike from the heart – PCDH19 Life
This summer, my husband and I took our kids on a road trip through Utah and Colorado. We drove through...
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...
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