Clara Lajonchere, PhD is the Deputy Director for the UCLA Institute for Precision Health, Co-Director of the Clinical Neurogenetic Research Program, and Adjunct Professor of Neurology in the David Geffen School of Medicine at UCLA. Dr. Lajonchere’s background reflects a wide range of professional, clinical, and research activities across central nervous system disorders. She has spent her career on cross-cutting issues in psychiatric genetics and translational medicine. Through the UCLA Institute for Precision Health, Dr. Lajonchere is working collaboratively with thought leaders across the state of California to advance precision medicine and improve outcomes for patients. She currently serves as chair of the California Precision Medicine Advisory Council for the Governor’s Office of Planning and Research.
Latha Palaniappan, MD, MS is Professor of Medicine and Scientific Director of Precision Genomics and Pharmacogenomics in Primary Care at Stanford. She is the faculty lead for the Stanford Biobank, a population based biobank designed to accelerate genetic and other -omics discovery.
Sharon F. Terry is President and CEO of Genetic Alliance, an enterprise engaging individuals, families and communities to transform health. Genetic Alliance works to provide programs, products, and tools for ordinary people to take charge of their health and to further biomedical research. As ‘just a Mom’ with a master’s degree in theology, she cofounded PXE International, a research advocacy organization for the genetic condition pseudoxanthoma elasticum (PXE), in response to the diagnosis of PXE in her two children in 1994. She is the author of 150 peer-reviewed papers, of which 30 are clinical PXE studies. Her story is the topic of her TED Talk and TED Radio Hour. She has created people-centered technologies, tools, and resources, and holds patents. She was instrumental in getting the Genetic Information Nondiscrimination Act passed. She has many awards, including from the White House and the National Academies of Science, Engineering and Medicine.
Not Just Data: People as Drivers
Biomedical research has consistently ignored the people and been centered on their data. It is critical that people be not only at the center, but also driving the processes with other stakeholders. This radical shift is overdue. I will describe the solution Genetic Alliance, in partnership with Luna, has created.
Farid Vij is General Manager for Invitae's Data division where he leads strategy, product and operations for the business. His core focus is building a two-sided platform that connects patients, providers and researchers through patient-consented data to help patients find better care options and advance research through real world evidence generation. Prior to Invitae, Farid was co-founder and COO at Ciitizen, a company focused on providing patients with access to their complete medical records. At Ciitizen, he drove the company's operations and go-to-market strategy, before leading its acquisition by Invitae in September 2021. Before Ciitizen, Farid held various commercial and operational roles at ZL Technologies, a big data company focused on harnessing unstructured information to drive critical privacy decisions for large organizations. Farid holds a BS in Economics from the Wharton School at the University of Pennsylvania. He enjoys angel investments in mission-focused companies and supporting education-focused non-profit organizations.