Information Center for Sickle Cell and Thalassemic Disorders
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.