WEBINAR – DEE-P CONNECTION
The Dup15q Alliance is proud to be a partner of the DEE-P initiative (the Developmental and Epileptic Encephalopathies-Project), which is dedicated to serving the distinct needs of families with children most severely affected by DEEs.
Developmental and Epileptic Encephalopathies (DEEs) are defined as a group of rare neurodevelopmental disorders, characterized by early-onset seizures that are often intractable with a developmental delay.
DEE-P will focus on improving the accessibility of the best available resources, from all sources, to these families. The website will provide a unique space dedicated exclusively to providing—in one place—links to practical information of particular interest to this population. There will be no cost to participating organizations or families.
DEE-P CONNECTIONS INTRODUCTORY WEBINAR
Gabrielle Conecker, President and Co-Founder of Wishes for Elliott and the DEE-P Connections Initiative—and mother to Elliott, who has a severe DEE—will introduce founding member organizations, how we envision collaboration and share the goals and plans of the DEE-Project.
Tracy Dixon-Salazar, PhD, Director of Research and Strategy for the LGS Foundation and mother to Savannah – her daughter with a DEE, will then provide a scientific overview of DEEs.
We will then open the discussion to hear from you about your challenges and what topics would be most helpful for us to explore in future webinars.
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