News


Ralph Colasanti Elected National President of CAF

Ralph Colasanti

April 23, 2022 – History was made today at the annual board meeting of the Cooley’s Anemia Foundation (CAF) when Ralph Colasanti was elected the first person with thalassemia to serve as National President of the Foundation’s board of directors. The Foundation, which was started in 1954, is the primary voice for those with thalassemia, […]

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ICER To Look at Gene Therapy for Thalassemia

The Institute for Clinical and Economic Review (ICER) announced today that it will assess the comparative clinical effectiveness and value of betibeglogene autotemcel (Zynteglo/LentiGlobin, bluebird bio) for the treatment of beta thalassemia. An FDA decision on betibeglogene autotemcel is expected in mid-2022.  ICER is inviting public comment on its initial Draft Scoping Document, which details […]

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CAF Accepting Applications for 2022 Medical Research Grants & Fellowships

November 3, 2021 – The Cooley’s Anemia Foundation is accepting applications for medical research grants and fellowships in areas related to thalassemia. The awards are in three categories: Support for Ongoing Clinical Research in Thalassemia Research Fellowships Clinical Trials in Thalassemia Cell and Gene Therapy Details are as follows: Support for Ongoing Clinical Research in […]

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CDC Webinar on Cardiovascular Complications on Nov 18

October 26, 2021 – Dr. John Wood will be presenting a webinar on November 18 at 2:00 pm (Eastern)  entitled “The Heart in Thalassemia” from 2:00 – 3:00 PM ET. This webinar is part of the Centers for Disease Control and Prevention’s (CDC’s) Public Health Webinar Series on Blood Disorders. In this webinar, Dr. Wood will discuss the three most […]

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CAF Welcomes Steve Hemraj as Patient Outreach Director

October 19, 2021 – Steve Hemraj, MPA is very excited and honored to join the team at Cooley’s Anemia Foundation as its Patient Outreach Director. He believes patient experience is paramount to linkage, retention, and optimal health outcome. Steve’s eighteen years knowledge and experience in patient outreach and engagement, clinical experience and quality improvement well […]

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CAF Accepting Applications for 2021-2022 Patient Incentive Awards Until Feb 11, 2022

October 15, 2021 – The Cooley’s Anemia Foundation is now accepting applications for its 2021-2022 Patient Incentive Awards, as well as the 2021-2022 Educational Incentive Awards for Children of Individuals with Thalassemia. These awards are open to thalassemia patients, as well as children of thalassemia patients, who are U.S. residents and are currently pursuing education […]

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Radhika Sawh and Lauren Morse Publish Paper on Thalassemia in The Journal of Pediatric Nursing

October 13, 2021 – Congratulations to Radhika Sawh and Lauren Morse on the recent publication of their paper, “Transfer of care for people with severe forms of thalassemia: Learning from past experiences to create a transition plan,” in The Journal of Pediatric Nursing!  This paper addresses an ongoing need in the thalassemia community and we are […]

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