Month: March 2015

CAAF Update: CAF Urges Action

March 31, 2015 – The Cooley’s Anemia Advocacy Forum (CAAF) is a Cooley’s Anemia Foundation project aimed at helping thalassemia patients and families learn how to make their voices heard on federal issues of importance to the thalassemia community. (A brochure about CAAF can be downloaded by clicking here.) Following is a report from Lyle Dennis […]

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Novartis Announces Approval of Jadenu

April 1, 2015 – Novartis announced that the Food and Drug Administration (FDA) has approved Jadenu (deferasirox) tablets for the treatment of chronic iron overload due to blood transfusions in patients 2 years and older, and for chronic iron overload in non-transfusion-dependent thalassemia syndromes (NTDT) in patients 10 years and older. Jadenu is a new […]

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2015 Patient-Family Conference Celebrates Self-Empowerment

March 27, 2015 – Registration is now open for CAF’s 2015 Patient~Family Conference! For 2015, this always-anticipated annual event will be held June 26-28 at the Wyndham Hamilton Park Hotel and Conference Center in Florham Park, NJ. Entitled “Celebrating Self-Empowerment,” the 2015 Conference is a unique opportunity for U.S. individuals with thalassemia and their family […]

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Bringing Joy to Their Parents

March 24, 2015 – Nicole Walsh and Rupert Ho have adopted two children with thalassemia from China. CAF talks with Nicole below about their experience as adoptive parents. CAF: When did you adopt your children? Nicole: We adopted our son, Aaron, when he was 3 years old, and living in an orphanage in Southern China. […]

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Global Experts to Share Knowledge at Tenth Cooley’s Anemia Symposium

March 20, 2015 – Leading thalassemia experts from around the world will converge in Illinois in October to participate in the Tenth Cooley’s Anemia Symposium. Presented by the New York Academy of Sciences (NYAS) and the Cooley’s Anemia Foundation (CAF), this major scientific meeting takes place October 18-22, 2015 in Rosemont, IL. “I am absolutely […]

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Thalassemia Event at Republic in Astoria

March 19, 2015 – 9 HUGS and CAF are holding an event to raise awareness of the fight against thalassemia at Republic Bar in Astoria, NY on March 25. The evening starts at 7:00 p.m. and the address is 33-29 Astoria Blvd. 9 HUGS is a dedicated 501 (c) (3) non-profit organization that inspires others […]

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NYS OSIA Dine-Around for CAF is April 7

March 15, 2015 – The incredible folk at NYS OSIA are once again putting together an incredible Dine-Around to benefit Cooley’s anemia. This is a one-of-a-kind evening featuring food, wine and desserts from some of Long Island’s finest restaurants, bakeries and wineries. You owe it to yourself to attend. Details are below!

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Keeping the Blood Flowing: Getting Involved in a Blood Drive

March 6, 2015 – As many people with thalassemia require lifelong blood transfusions, maintaining an adequate blood supply is of considerable importance to the thalassemia community. Below, CAF interviews two people – a person with thalassemia and a member of CAF’s Board of Directors– who have been active in promoting the importance of blood drives […]

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