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Thalassemia Standard-of-Care Guidelines (mobile optimized)
 
PHRESH logo We are partnering with the California Public Health Research Epidemiology Surveillance (PHRESH) Project. READ ABOUT IT HERE!
 
ICF-logo.gif We would like to thank the Italian Catholic Federation for its generous donations and ongoing support for our thalassemia program.
 

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 Children’s Hospital Research Center 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.

Dr. Vichinsky
Elliott Vichinsky, MD
Director, Hematology/Oncology
Children's Hospital & Research Center 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.

new!   Intrauterine Therapy for Alpha Thalassemia Major: A Multidisciplinary Center.

Updated 10/6/2014

Laurice Levine
Laurice Levine, MA, CCLS
Thalassemia Outreach Coordinator
Children's Hospital & Research Center Oakland

International Thalassemia Day 2013
USAA Radio Network interview with Dr. Elliott Vichinsky
to raise awareness of thalassemia
and improve its diagnosis and management worldwide.

 


Northern California Comprehensive Thalassemia Center
UCSF Benioff Children's Hospital Oakland
747 52nd Street, Oakland CA 94609   •   Phone: (510) 428-3651   •   Fax: (510) 450-5647
© 2003-2012 Children's Hospital & Research Center Oakland
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