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Vanessa Vogel-Farley is the Research and Data Governance Lead and serves as the Principle Investigator for RARE-X. She is an independent data and advocacy consultant in the rare space as well. She is the co-founder of the Commission on Novel Technologies for Complex Copy Number Variants and serves on the Coordinating Committee for the Rare Epilepsy network as well as the Epilepsy Leadership Council and the Alliance for Genetic Etiologies in Neurodevelopmental Disorders and/or Autism. Vanessa served as the Executive Director of the Dup15q Alliance from 2016 – 2021 and joined the Dup15q Alliance Board in 2021 to lead the Science and Research Strategy. She also served as Director of Operations of ACEing Autism from 2008 through 2015. Previously, she was at the University of Minnesota, Center for Neurobehavioral Development. She has also served as the Clinical Research Coordinator for the Division of Developmental Medicine Laboratory of Cognitive Neuroscience, Boston Children’s Hospital, working on collaborations with scientists from MIT and Harvard examining several clinical populations, including autism. She possesses 20 years of experience in data collection methods as well as expertise in non-profit and research operations, patient advocacy and support, non-profit management, and broad knowledge of child development neuroscience/psychology research and administration.