Hemophagocytic lymphohistiocytosis (HLH) is a rare disorder of the immune system causing uncontrolled inflammation that damages organs of the body leading to rapid death. A cure is possible but an accurate and quick diagnosis needs to be made.

Unfortunately, many physicians are not aware of HLH. As such, it is often misdiagnosed and/or diagnosed too late. Most patients without access to effective treatments such as hematopoietic (blood or bone marrow) stem cell transplantation will die of their disease.

Cincinnati Children’s is the most experienced facility in the nation in treating HLH. We have assembled a team of researchers and physicians who have studied the disease extensively. Families who have faced an HLH diagnosis and philanthropists with the passion to support our children with the disease have banded together with our team to create the HLH Center of Excellence.

The center focuses on four core priorities: 

The clinical and research pioneers at Cincinnati Children’s are committed to changing the outcome for children with HLH.

Research Studies

Discovery through innovative research is essential to developing the medical breakthroughs that improve outcomes for children with HLH. Currently, Cincinnati Children's is conducting many research studies that could change how we diagnosis and care for patients with HLH. One such ongoing study explores the role of a new drug that blocks a protein involved in the uncontrolled inflammation of the disease. We invite you to read a presentation by one of our experts, Michael B. Jordan, MD, about this NI-0501 trial.