Vanessa serves the rare disease community as the Research and Data Governance Lead For RARE-X (www.rare-x.org
) and also as Executive Directory of the Dup15q Alliance. 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 15 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.