Speaker

Karmen Trzupek

SR DIRECTOR, SCIENTIFIC PROGRAMS, GLOBAL GENES/ RARE-X
Karmen Trzupek currently serves as the Sr Director of Scientific Programs at RARE-X, a position that enables her to bring together her passion for supporting rare disease communities and her experiences with academia, telemedicine, advocacy, and industry. At Rare-X, Karmen drives collaborative programming and partnerships to maximize the Rare-X data platform for the advancement of patient-driven research and industry-supported therapeutic pipelines. Previously, Karmen served as the Director of Clinical Trial Services at InformedDNA, supporting patients with rare genetic diseases to navigate clinical trial eligibility and enrollment. As a clinical genetic counselor, Karmen developed the first nationwide telemedicine program for rare disease genetic counseling and testing, and co-developed the first pharma-sponsored genetic testing program in the US. She holds a B.S. in Microbiology from the University of Illinois and an M.S. in Genetic Counseling from Northwestern University.
Speaking In
4:15 PM - 5:15 PM
Tuesday, June 6
Data only has value when it is discoverable, shareable, and usable, but most rare disease data…