July 19, 2013 – Open House with Cooley’s Anemia Foundation representatives at Children’s Hospital Los Angeles on July 25 & 26! Please join Cooley’s Anemia Foundation’s Social Worker, Kathleen Durst, MA, LCSW, and National Communications Director Craig Butler for a special Open House on July 25 and 26. Come talk to the Foundation about the […]
July 17, 2013 – What happens in Washington DC and in state government can have a profound effect on people living with thalassemia. Making your needs and opinions known is not just part of the democratic process; it can influence decisions that have an impact on you and others in the thalassemia community. Now CAF […]
July 15, 2013 – What would motivate a person with thalassemia to make changes to improve adherence to therapy? Can metabolic substances in a person with thalassemia give a clue to how iron is loading in his/her heart? Would moving the fetal hemoglobin gene cause it to create more fetal hemoglobin? These are just some […]
July 11, 2013 – A study recently published in the medical journal Magnetic Resonance in Medicine concludes that Spin-Density Projection-Assisted MRI measurement of liver iron concentration (LIC) is “a reliable and accurate method for estimation of LIC that is suitable for diagnosis and management of patients with iron overload.” The study, entitled “Multicenter validation of […]
July 11, 2013 – Liver problems are often a problem for people with thalassemia. Here are some steps that you can take to help prevent them: Learn more about liver issues in thalassemia. Click here.
July 9, 2013 – Cardiac issues are often a problem for people with thalassemia. Here are some steps that you can take to help prevent them: Click here to learn more about cardiac issues in thalassemia.
July 1, 2013 – Peer-reviewed medical journals report on studies that provide valuable medical information to scientists, researchers and doctors. The Cooley’s Anemia Foundation frequently provides links to articles from these journals that may be of interest to the thalassemia community. Below are links to some recent articles that relate to people with thalassemia and […]
June 20, 2013 – The American Heart Association (AHA) has released a consensus statement on “Cardiovascular Function and Treatment in Beta-Thalassemia Major.” Published online in the AHA journal Circulation, the document states in part that “central to early identification of cardiac iron overload in TM (thalassemia major) is the estimation of cardiac iron by cardiac […]
May 31, 2013 – This year’s CAF Patient~Family Conference is June 28-30 in Philadelphia. (Click here for details.) Below, Jospehine Bila talks about her reaction to last year’s Conference, which was the first she attended. CAF: Why do you think these Patient~Family Conferences are valuable? Jo: In the past, I was very apprehensive about identifying myself […]
May 31, 2013 – CAF is proud to be part of the international thalassemia community and of the Thalassaemia International Federation (TIF). While thalassemia affects a relatively small population here in the United States, its global impact is substantial: In some parts of the world, carrier rates can be astonishingly high, with some regions of […]
