Susan Paulukonis, MA, MPH
Susan Paulukonis is a rare disease epidemiologist, focused on public health surveillance of severe non-reportable diseases and their impact on the people living with them and their surrounding communities. Health disparities within the populations living with these diseases or across similar conditions are of special interest in her work.
Beginning in 2006, Ms. Paulukonis transitioned from earlier work in educational research to the study of sickle cell disease, a severe and life threatening genetic condition. She managed the first public health surveillance programs for sickle cell and thalassemias, a related genetic hemoglobin disorder, beginning in 2010. She has been PI for the California Sickle Cell Data Collection Program at Tracking California since 2015. She was also program manager for the Metropolitan Amyotrophic Lateral Sclerosis Surveillance Program in California. She is also responsible for surveillance of harmful algal bloom-related illness in the state.
Ms. Paulukonis received a BA in History and an MA in Educational Technology from San Francisco State University, and an MPH degree in Epidemiology and Biostatistics from the University of California, Berkeley.
California Sickle Cell Data Collection Program
California's Sickle Cell Data Collection Program (SCDC) has worked to share information and educate stakeholders and policy makers about sickle cell disease in our state since 2015. The program gathers and links data from a variety of sources to create a profile of the challenges and health outcomes people with this life threatening and painful disorder face.
SCDC works with researchers, health care providers, state and federal agencies, and most importantly advocates to provide information that will improve care and outcomes for those living with sickle cell disease.