The purpose of this website is to provide information which will result in improved quality of life and survival to thalassemia patients and their families. In order to accomplish this,the website addresses information necessary for patients, families, health providers and interested community members.
Elliott Vichinsky, MDDirector, Hematology/OncologyChildren's Hospital & Research Center at Oakland
Elliott Vichinsky, MDDirector, Hematology/OncologyChildren's Hospital & Research Center at Oakland
Thalassemia is the most common, inherited single gene disorder in the world. Early comprehensive treatment has changed thalassemia from a fatal pediatric disease to one in which patients live productive lives throughout adulthood. Advances in treatment are exciting, resulting in the potential for cure and improved quality of life. However, many patients never receive the information needed to make educated decisions about treatment. Many ethnic groups are unaware of their genetic risk of thalassemia and do not receive genetic counseling or pre-natal diagnosis. Others have heard of pre-implantation genetic diagnosis as a technique to achieve a healthy newborn, but do not have access to objective medical information of its risks and benefits. Thousands of patients receive medical care outside of specialized thalassemia centers. These patients and 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, hormone replacement, heart disease, osteoporosis and hepatitis. Quality of life for families and patients can be excellent with a future including employment, marriage and children. To achieve this, families and providers need information concerning psychological wellness, cultural issues and counseling for family planning and marriage. In summary, this site should provide the family and providers with necessary information to make informed decisions and achieve optimal quality of life. It is our hope that by providing electronic education about the disease, we can raise awareness, encourage people to get tested for trait, and spread knowledge about comprehensive treatment to the global community.
Thalassemia Patient & Research Fund:
There are many different ways you can help in the ongoing fight against Thalassemia. The Northern California Comprehensive Thalassemia Center needs your support to help fund the Thalassemia Patient Fund which have been set up to help pay for patient expenses that become major difficulties over the long term such as transportation costs for families who live in rural areas, desferal supplies, pumps, medications not covered by insurance, parking vouchers and other costs. The fund also provides access to more expensive new therapies for low-income families, and finances patient participation in new research programs. Due to language and cultural barriers, part of the patient fund also pay for professional interpreters and translation of medical literature into languages such as Chinese, Vietnamese, Lao, Cambodian, Hmong, and Tagalog and other educational materials to target these high at risk population.Financial contributions and fund-raising by organizations is greatly needed and appreciated. Please act now to support the Thalassemia Patient Fund. It is through your support that we are able to provide quality comprehensive care to our patients to improve their quality of life. Many thanks to our supporters!To make an online donation, please visit http://www.chofoundation.org/donate/index.html. Please be sure to select 'Thalassemia Patient & Research Fund' in the pull-down menu, as the designation for your donation.
You can also send a check to:
Thalassemia Patient & Research FundChildren's Hospital Foundation747 Fifty Second
You can also send a check to:
Thalassemia Patient & Research FundChildren's Hospital Foundation747 Fifty Second
StreetOakland,
CA 94609(510) 428-3814
Tax ID # 94-3315514