This quality of care webinar was moderated by Gabrielle Conecker, mother to Elliott who has SCN8A-related epilepsy and severe DEE, and is Co-Founder of Wishes for Elliott and DEE-P Connections.

This is a recording of the DEE-P Connections webinar from May 27, 2020 “Improving the Quality of Rare Childhood Epilepsy Care” which introduced us to two major efforts underway to improve the quality of epilepsy care for those with severe developmental and epileptic encephalopathies (DEEs). The webinar was planned in coordination with all panelists.

OUR PANELISTS, ALL TIRELESS ADVOCATES FOR RARE EPILEPSIES, INCLUDED:

FROM THE PEDIATRIC EPILEPSY LEARNING HEALTHCARE SYSTEM (PELHS):

Anup Patel – Section Chief of Pediatric Neurology at Nationwide Children’s and Associate Professor of Clinical Pediatrics and Neurology at The Ohio State University College of Medicine

Amy Zampi – parent of 8 year old Emma who also happens to have epilepsy. Amy began working in patient advocacy in 2012 and has continued to serve on various committees over the years and currently as a parent representative for PELHS. Amy lives with her husband and three children in Ann Arbor, MI.

FROM THE EPILEPSY LEARNING HEALTHCARE SYSTEM (ELHS):

Jeff Buchhalter – Pediatric Neurologist and Consultant with the Epilepsy Foundation of America

Nicole Murray – parent to Ronan, who has epilepsy; Corporate Philanthropy Officer at Epilepsy Foundation and CHOP Patient Family Partner.

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