Mission Statement

Information Center for Sickle Cell and Thalassemic Disorders

Our mission

The primary goal of the Information Center for Sickle Cell and Thalassemic Disorders is to provide the most accurate and up-to-date information on hemoglobin disorders, particularly sickle cell disease and thalassemia, as well as disordrers of iron metabolism. The information is designed to be useful to health care personnel, patients and students. Freely available information on diseases empowers patients to participate fully in their own care. The better one understands a problem, the better one can handle it.

Who we are

The Information Center is an evolution of The Joint Center for Sickle Cell and Thalassemic Disorders that was formed under a mandate from the Brigham and Women's Hospital and the Massachusetts General Hospital in 1994 to provide the finest care possible to patients with sickle cell disease or thalassemia. The two hospitals, now under a formal relationship called Partners in Health Care, Inc. remain committed to the health care needs of the communities in the Boston area. Sickle cell disease primarily affects people of African descent. Thalassemia occurs commonly in people of Mediterranean or Southeast Asian background. The Information Center provides valuable learning materials for all people with these conditions.

Why we are

Health maintenance is axiomatic to better quality of life. The Information Center for Sickle Cell and Thalassemic Disorders provides insight into the requirements for comprehensive patient care needed to prevent complications of sickle cell disease and thalassemia. Comprehensive care includes conventional health care services as well as emotional and social support.

What we do

Our fundamental tenet is that optimal care of any chronic illness requires coordinated efforts by many health care professionals. The core staff must work closely with professionals from many other disciplines to anticipate and, when possible, to prevent problems.

Whom we serve

Patients and families of patients with red blood cell disorders including, but not limited to, thalassemia or the sickle syndromes throughout the world. The site has more than 50,000 visitors per year from every continent on the globe.