Susan Paulukonis is a rare disease epidemiologist, focused on public health surveillance of non-reportable diseases of significant impact and their effect on the people living with them. 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, with additional funding for this work received in 2019 from the state of California.

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. She resides in Atlanta, GA, and makes program-related visits to California frequently.

Representative Publications:

Cancer Specific Survival in Patients With Sickle Cell Disease

Acute Care Utilization at End of Life in Sickle Cell Disease: Highlighting the Need for a Palliative Approach

Concurrent Use of Hydroxyurea and Deferasirox in Californians With Sickle Cell Disease

Impact of Medicaid Expansion on Access and Healthcare Among Individuals With Sickle Cell Disease

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