January 28, 2009 – The New York State Grand Lodge of OSIA (Order Sons of Italy in America) will hold its annual “Dine Around” for Cooley’s anemia on February 10, 2009. This special event will be held at Verdi’s in Westbury, NY. “This is always a wonderful evening,” says Gina Cioffi, CAF National Executive Director. […]
January 27, 2009 – In response to information concerning a label change for the iron chelator Exjade, CAF today forwarded the following letter to patients and health care providers: We are writing to inform you that due to post-marketing reports of adverse effects, the FDA asked Novartis Pharmaceuticals to make a labeling change to […]
January 26, 2009 – Stephanie More, BSc, a genetic counseling student at Sarah Lawrence College, is conducting an online study on reproductive care for women with thalassemia. Below is information from Ms. More for any patients who may wish to participate in the online study. “It is only recently that women with certain serious conditions, […]
January 26, 2009 – According to a recent news article, there may be more than 70,000 people with thalassemia in Pakistan. An article published today in the “International News” quotes Al-Mustafa Thalassemia Unit Project Director Munaf Aliana as estimating the country’s thalassemia population at more than 70,000, with 6,000 children with thalassemia born annually.
January 26, 2009
January 20, 2009 – The Children’s Hospital & Research Center Oakland has published its new Standards of Care Guidelines for Thalassemia. The guidelines, which have been authored by a team of knowledgeable thalassemia care experts lead by Elliott Vichinsky, MD, and Laurice Levine, MA, CCLS, provide valuable information about the proper care of individuals with […]
Next episode to be posted: February 2, 2009 What Is Hemoglobin H Disease? People with hemoglobin H disease, a form of alpha thalassemia, make less than the usual amount of alpha globin. This can cause anemia, which can vary from mild to severe. Many people with hemoglobin H disease do not have serious health problems […]
January 16, 2009 – According to a story in the January 8 edition of Sri Lanka’s Daily News, the government’s Healthcare and Nutrition Ministry spends 5% of its annual budget on individuals with thalassemia. The article states that Sri Lanka has approximately 2,000 thalassemia patients and that almost 100 children are born with thalassemia […]
January 15, 2009 – The Thalassemia Clinical Research Network (TCRN) presented a poster on Hemoglobin H-Constant Spring , a form of alpha-thalassemia, at the annual meeting of the American Society of Hematology (ASH) in December. The poster, entitled “Hemoglobin H-Constant Spring in North America: A Common Alpha Thalassemia with Frequent Complications,” reported on a […]
January 12, 2009 – Memorial-Sloan Kettering Cancer Center will present a forum, “Treating Thalassemia: From Transfusion to Engineered Stem Cells,” on February 5, 2009, from 2:00-5:30 p.m. This symposium is intended for physicians, researchers, patients and patient advocates. The forum will be divided into two sections. The first half, from 2:00-3:30, will focus on”Current Therapies for […]
