Tag: Cooley’s anemia

School Toolkit for Thalassemia Now Available for Download

August 21, 2013 – If you or your child needs to talk with school personnel about your experience with thalassemia and how it may impact attendance or schoolwork, CAF has a new publication that can help: The School Toolkit for People with Transfusion-Dependent Thalassemia. Over the years, the Cooley’s Anemia Foundation has heard from some patients […]

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CAF Funds $375,000 in Important Thalassemia Research Areas

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 […]

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Study Examines MRI-Based Iron Measurements

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 […]

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June 14 is World Blood Donor Day

June 14, 2013 – Today is World Blood Donor Day, a day to celebrate the generosity of all those who donate blood and to raise awareness of the need for blood donations. Individuals with thalassemia, many of whom require red blood cell transfusions on a regular basis, are aware of the importance of blood donation. […]

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Hit a Homer at the Cooley’s Anemia Night with the Mets

June 5, 2013 – Help the Cooley’s Anemia Foundation and the New York Mets hit one out of the field for those with thalassemia! On August 23, it’s Cooley’s Anemia Night at Citi Field in Queens, NY as the Amazin Mets take on the Detroit Tigers! In an effort to create awareness about Cooley’s anemia, […]

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UK Thalassemia Patient Runs London Marathon

May 14, 2013 – A big shout out to Gabriel Theophanous, President of the UK Thalassaemia Society, for competing in his second Virgin London Marathon – and for shaving 30 minutes off his past time! This is a tremendous achievement and demonstrates once again that advances in treatment are helping more people with thalassemia meet and […]

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Journal Publishes Exjade Food Study Results

April 30, 2013 – The medical journal Pediatric Blood and Cancer published online on April 23 a study entitled “The Palatability and Tolerability of Deferasirox Taken With Different Beverages or Food.” This is known to many in the thalassemia community as “the Exjade food study;” as the official title suggests, it looks at the option […]

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Philly’s the Place to Be June 28-30

April 22, 2013 – The 2013 Patient~Family Conference is coming (June 28-30) in Philadelphia. This is an incredible opportunity for thalassemia patients and family members to get together, hear a lot of important medical information, ask questions and have the chance to socialize. You really don’t want to miss it! We thought you might like […]

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