PCDH19 Resources
All Resources

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...

PCDH19 Genetics 1: Understanding Genes & Chromosomes
Learn more about the genes and chromosomes related to PCDH19. This is the first in an ongoing series of instructional...
Love in an Age of Epilepsy: Relationship Help for Parents of Kids with PCDH19
Learn more about an integrated behavioral health care model for children with epilepsy. This session highlights UCSF’s approach to addressing...

State-by-State PCDH19 Resources
Explore resources related to PCDH19 Epilepsy in your state....

Le Shepherd, LPC-Supervisor: Grief & Trauma Among Parents of Kids with PCDH19 Epilepsy
Learn more about grief and trauma among parents of children with PCDH19 epilepsy, presented by Le Shepherd, LPC-Supervisor, at the...

Keena Melville, PhD: A Sensory-Based Approach to Reading Comprehension for Neurodivergent Folks
Learn more about the sensory-based approach to reading comprehension for neurodivergent individuals, presented by Keena Melville, PhD, at the PCDH19...

Stephanie Gandomi, MS, MBA, LCGC: Integrative Health Genomics: A Critical Shift Toward Whole-Person Healthcare
Learn more about the role of genetics in PCDH19-related disorders in this session with Stephanie Gandomi, MS, MBA, LCG. She...

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...

Lacy Smith, MS, CGC & Nilika Singhal, MD: PCDH19 Registry: Looking Back on Ten Years
Learn more about the PCDH19 Patient Registry in this session led by Dr. Nilika Singhal (UCSF Benioff Children’s Hospital) and...

Dr. Francesco Dellepiane: In vivo evaluation of structural and connectivity changes in patients with PCDH19 via novel diffusion MRI models
Learn more about the cutting-edge brain imaging research presented by Dr. Francesco Dellepiane, a pediatric neuroradiologist at Bambino Gesù Hospital...

Prof. Paul Thomas PhD: Investigating Molecular Mechanisms Underlying PCDH19 Clustering Epilepsy
Learn more about Dr. Charles Nelson’s research on how early life adversity affects brain development, behavior, and cognition. His work...

Julie Ziobro, MD / PhD: Examining Inhibitory Interneurons in PCDH19-Clustering Epilepsy
Learn more about cutting-edge research from Dr. Julie Zdeb-Rutter at the University of Michigan, exploring how inhibitory interneurons and disrupted...
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