Brief
On November 12, 2025, the NYU ISEE Lab, in partnership with the Institute for Excellence in Health Equity (IEHE), hosted the Sickle Cell Disease: 115 Years Later Symposium at NYU’s Medical Science Building, convening a wide range of clinicians, researchers, policymakers, and advocates to address systemic inequities in care. The event highlighted that while Sickle Cell Disease (SCD) is a global condition, it presents a critical localized crisis; Dr. Emmanuel Peprah noted that approximately 10% of all Americans living with SCD reside in New York State, heavily concentrated in New York City. Additionally, Dr. Michael Merson emphasized the complex intersection of clinical and structural challenges shaping patient outcomes, while Dr. Gbenga Ogedegbe pointed out a stark funding disparity, highlighting that SCD research receives disproportionately lower funding than conditions with similar disease burdens, such as cystic fibrosis.
The overarching consensus across the sessions was that biomedical breakthroughs alone cannot solve the crisis without a parallel commitment to social justice and systemic overhaul. Presenters called for targeted interventions to dismantle these long-standing barriers, including specialized provider training to reduce stigma in emergency departments, smoother multidisciplinary transitions from pediatric to adult care, and data collection models that prioritize the authentic, lived experiences of patients over clinical metrics alone. The event, which concluded with a poster session showcasing emerging research from early-career professionals, reinforced that the future of SCD care depends on combining cutting-edge medical innovation with sustained community partnerships and elevating patient voices in leadership and governance.
Booklet
View the full booklet here
Flyer
Photos from the event
