Eighth Cooley's Anemia Symposium
Thursday, March 17, 2005 - Saturday, March 19, 2005
The planned symposium—the Eighth Cooley’s Anemia Symposium—will not only focus on the advances over the last six or seven years but will illuminate many unsolved but critically important issues in the understanding and treatment of thalassemia, thus offering the scientific, clinical, caregiving, and patient communities the most up-to-date exchange on the current and future perspectives of the disease.
Elliott Vichinsky (Children's Hospital and Research Center at Oakland)
Jayne Restivo (Cooley’s Anemia Foundation)
Cooley’s anemia or thalassemia major is a blood disorder characterized by a marked increase in F hemoglobin and a decrease in the production of certain oxygen-carrying proteins in red blood cells. Thalassemia major is the most severe form of chronic familial anemias that result from the premature destruction of red blood cells, and is inherited as an autosomal recessive trait. While originally found in people living near the Mediterranean Sea, the migration of people around the globe has introduced thalassemia to many parts of the world where it was not previously common, such as the United Kingdom, mainland Europe, the United States, and Asia.
Since the Cooley’s Anemia Foundation and the New York Academy of Sciences teamed up to hold the Seventh Cooley’s Anemia Symposium in Cambridge, Massachusetts in 1997, major advances have taken place in the understanding and treatment of the disease. The molecular mechanisms responsible for the switch from fetal hemoglobin to adult hemoglobin production have been further clarified, while new drugs to enhance the production of fetal hemoglobin and relieve the anemia of thalassemia have been introduced and studied.
Understanding of the relationship between molecular genotype and clinical phenotype has been advanced, and the techniques for molecular diagnosis, including prenatal diagnosis, have been vastly improved. Most importantly, there have been dramatic improvements in the treatment and prevention of complications of thalassemia. As a result, patients are now living longer, albeit with more disability. Problems such as osteoporosis, heart failure, growth hormone deficiency, pulmonary hypertension, and infertility can now be detected early and treated.