Full Name
Elaina Jurecki
Company
National Phenylketonuria Alliance
Speaker Bio
Elaina Jurecki is currently working as the Director for Research Development for the patient advocacy organization, National Phenylketonuria Alliance, and assisting with several other non-profit organizations, including Organic Acidemia Association, Homocystinuria Network America, and Maple Syrup Urine Disease Family Support Group. She is also working as a consultant for several Biotech organizations development treatments for metabolic genetic disorders. She previously worked as the Executive Director of Scientific Communications, in Global Medical Affairs, for the past 15 years at BioMarin Pharmaceutical Inc., responsible for publication strategy, scientific messaging, management of congress activities, and assisted in the development of clinical research protocols and educational efforts. Prior to that, she served as the Regional Metabolic Coordinator for the Northern California Kaiser Medical Centers for about twenty years. Ms. Jurecki has coauthored many publications in a variety of metabolic, genetic, and clinical journals, served as a journal reviewer, and has written book chapters on the management of genetic disorders. She is an active member in several professional organizations and a founding member of the Genetic Metabolic Dietitians International. She is the co-chair for the organic acidemia nutrition guidelines development committee, a project funded by the Southeastern Newborn Screening and Genetics Collaborative, and published, ‘Nutrition management guideline for propionic acidemias: An evidence- and consensus-based approach’ in Molecular Genetics and Metabolism in 2019, and currently on the workgroup for developing nutritional guidelines for urea cycle disorders. She has given numerous presentations at scientific meetings, advisory boards, and patient events on various topics related to research, treatment, education, and clinical management of genetic disorders.
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