Texas Children’s Celebrates World Thalassemia Day

Texas Children’s Cancer and Hematology Center recently hosted a special event for families whose children have thalassemia, a potentially severe, inherited blood disorder that impairs the body’s ability to produce hemoglobin.  According to Dr. Kalindi Narine, a physician at the Texas Children’s Hospital West Campus Cancer and Hematology Clinic and Assistant Professor at Baylor College of Medicine, “patients with thalassemia often have anemia and some require life-long blood transfusions.” She also noted that although it is a rare disorder in the United States, it is one of the most prevalent inherited blood disorders in many parts of the world, including Africa and Southeast Asia. 

Among the many experts who shared their insights at the event, Dr. Alexander Ngwube, Director of the Hemoglobinopathy Service, Cell Therapy and Bone Marrow Transplant Program at Texas Children’s Hospital and Associate Professor at Baylor College of Medicine, illuminated the landscape of curative options for thalassemia. In addition, Dr. Aaron Cheng from the University of Pennsylvania and Dr. Kunal Bhatt from Emory University both generously spoke during a powerful lived-experience panel about their unique, personal experiences of living with transfusion-dependent thalassemia. Their openness and insights resonated deeply with attendees. “Witnessing the shared experiences during our Thalassemia Family Day event truly reaffirmed why we dedicate ourselves to this field. It was inspiring to see the community come together,” shared Dr. Jennifer Tran, a physician at the Texas Children’s Hospital West Campus Cancer and Hematology Clinic and Assistant Professor at Baylor College of Medicine. 

In a day filled with engaging activities and informative sessions, children and adults alike found opportunities to learn and connect. The incredible Texas Children’s Child Life specialists and dedicated volunteers orchestrated age-appropriate events, thoughtfully designed to help young patients understand thalassemia and encourage open dialogue amongst peers facing similar journeys. Simultaneously, parents and older patients had the privilege of attending insightful speaker sessions.

The event coincided with World Thalassemia Day on May 8, amplifying global awareness and support for individuals and families affected by this condition and underscoring the commitment of the Sickle Cell and Thalassemia Program at Texas Children’s Hospital. At the forefront of clinical care and research, Texas Children’s Sickle Cell and Thalassemia Program is driven by a mission to deepen understanding of these blood disorders, prevent complications and ultimately provide pathways for cures. This crucial work is made possible through the generous support of government grants and the philanthropic endeavors of numerous community-based organizations.

The team at Texas Children's Cancer and Hematology Center is renowned for its expertise in blood disorders. Texas Children’s is deeply committed to integrating cutting-edge laboratory findings with clinical practice to advance knowledge and develop more effective therapies. The center’s innovative research is fueled by grants and the generous contributions of our community partners.

Importantly, Texas Children’s patients have the unique opportunity to participate in various National Institutes of Health (NIH)-funded and industry-sponsored research studies led by our accomplished physician-scientists. These partnerships ensure that our patients have access to the most advanced and promising treatments available.

Learn more about the Texas Children’s Sickle Cell Disease and Thalassemia Program.