Full Name
Elaina Jurecki
Company
National PKU Alliance Organization
Speaker Bio
Elaina Jurecki is the Director for Research Development for the National PKU Alliance. She also assists with and has served as a medical advisor for several other non-profit organizations, including Organic Acidemia Association, Homocystinuria Network America, and Maple Syrup Urine Disease Family Support Group. In addition, she consults for several Biotech organizations on the development of treatments for metabolic genetic disorders. She previously worked as the Executive Director of Scientific Communications and Medical Information, in Global Medical Affairs, for 15 years at BioMarin Pharmaceutical Inc., responsible for publication strategy, scientific messaging, management of congress activities, and assisted in the development of clinical outcome assessment tools, clinical research protocols and educational efforts. Prior to that, she served as Regional Metabolic Nutrition Coordinator for the Northern California Kaiser Medical Centers for about twenty years managing individuals with inborn errors of metabolism. 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 (GMDI). She is the co-chair for the organic acidemia nutrition guidelines development committee, and published guidelines for propionic acidemia, and currently on the workgroup for developing guidelines for urea cycle disorders. She is a co-chair of the Research Dietitian Committee for GMDI and serves as an advisor for the ‘Hyperphenylalaninemia Consortium of the Rare Disorders Clinical Research Network’ also known as the PHEFREE Consortium (NIH U54 HD100982). She has given numerous presentations at scientific meetings, advisory boards, and patient events on various topics related to research, treatment, education, clinical outcome assessment tools, and clinical management of genetic disorders.
Elaina Jurecki