News




Ralph Colasanti Elected National President of CAF

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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Navdeep Singh Shares His Thalassemia Journey

October 27, 2021 – We invite you to read about Navdeep Singh’s journey with thalassemia at the following link: https://www.cdc.gov/ncbddd/thalassemia/stories.html. CAF thanks Navdeep for sharing his personal story with the thalassemia community and the CDC for helping people learn more about living with thalassemia.

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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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