The official web site of the Thalassemia Center at UCSF Benioff Children's Hospital Oakland
Welcome to the website for the Northern California Comprehensive Thalassemia Center at UCSF Benioff Children’s Hospital Oakland. The purpose of this website is to raise awareness and educate the patient community, the medical community, and the community-at-large on thalassemia. Through awareness and education, we strive to increase survival rates and improve the quality of life for patients around the world.
Elliott Vichinsky, MD
Children's Hospital & Oakland
Ash Lal, MD
Director, Thalassemia Clinical Program
Children's Hospital & Oakland
Thalassemia is the most common, inherited, single-gene disorder in the world. Early comprehensive treatment and improved technology have changed thalassemia from a fatal pediatric disease to one with which patients survive throughout adulthood and can enjoy productive lives. Advances in treatment have resulted in improved quality of life and the potential for a cure. However, many patients and families never receive the information needed to make educated decisions about their treatment, and many ethnic groups are unaware of their genetic risk of thalassemia and do not receive genetic counseling or prenatal diagnosis. Thousands of patients receive medical care outside of specialized thalassemia centers. These patients and their providers need information concerning recommendations for comprehensive screening tests; access to new research protocols and treatment, including transfusion therapy, new chelation therapy, stem-cell transplantation, and hormone replacement; and risk of heart disease, osteoporosis, and hepatitis.
Quality of life for people with thalassemia can be excellent, with a future including employment, marriage, and children. To achieve this, families and providers need information concerning psychosocial well-being, cultural issues, and counseling for family planning and marriage.
In summary, this site should provide patients who have thalassemia and their and providers with necessary information to make informed decisions and achieve optimal quality of life. It is our hope that by providing electronic education on the disease, we can raise awareness, encourage people to get tested for trait, and spread knowledge about comprehensive treatment to the global community.
We are organizing a thalassemia meeting in India this November:
The goal of this symposium is to develop collaborations between clinicians and scientists from the United States and India, which will serve to accelerate the development of breakthrough therapies for thalassemia and sickle cell disease. India has the largest population in the world affected with these serious inherited blood disorders. The majority of patients become sick soon after birth and many die during childhood due to inadequate treatment. The resources required to provide care - blood transfusions and expensive drugs - are an enormous burden on the health system. In the US, sickle cell disease is a public health and national research priority for which universal newborn screening has been implemented. The prevalence of beta thalassemia, a minority disease, is rising due to immigration. Several recent critical scientific advances in prenatal diagnosis, iron metabolism, erythropoiesis and gene therapy have the potential to revolutionize the entire field. There is a renewed hope that the suffering of individuals living with thalassemia and sickle cell disease can be reduced. Fast-track development of these discoveries is an imperative that can be realized through a reciprocal and cooperative scientific relationship between academic medical centers in India and the United States.