Welcome to the Cooley’s Anemia Foundation blog!

This blog will be a place for the Cooley’s Anemia Foundation to share information from and thoughts of invited members of the thalassemia community.

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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Prevent Liver Complications

May 14, 2013 – Although there have been great advances in recent years, liver complications are still a common issue for many with thalassemia. What can a person with thalassemia do to prevent liver issues? You can read more about liver issues in thalassemia by clicking here. What should be part of your Annual Comprehensive […]

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Video on Dietary Intake for Thalassemia

May 13, 2013 – As you know (and you do know this, don’t you?), the 2013 CAF Patient~Family Conference is coming up June 28-30 in Philadelphia. (Click here for more information!) We thought we’d post a short, 45-second portion of one of last year’s presentations: Ellen Fung, PhD, RD, CCD, speaking on Dietary Intake for Thalassemia. […]

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Care Walk Photos

May 12, 2013 – This year’s Care Walk was a tremendous success, helping raise funds and showing the support of so many people for those affected by thalassemia. We won’t have the final figures for a few days, but we wanted to share a few photos from the many Walks around the country and to […]

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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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Opportunity to Serve as a Peer Health Coach for Thalassemia

April 10, 2013 – The Cooley’s Anemia Foundation (CAF) has been a part of a steering committee with Centric Health Resources, the Patient Centered Health Management® organization that dispenses Ferriprox, to help develop education materials and opportunities to increase treatment compliance. One of the exciting new opportunities that Centric has asked CAF to continue to help them […]

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Video Walking

March 20, 2013 – If you’re a regular visitor to this site or to the CAF Facebook page, then you already know that Care Walk 2013 is happening on May 5. (Don’t know what Care Walk is? It’s our awesome annual fundraising event and opportunity to bring together the thalassemia community and its supporters around the […]

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Gene Therapy and Other Advances Happen Because of You

February 25, 2013 – The fact that the first U.S.-based gene therapy trial for thalassemia has started (click here for details) is fantastic. Some might think it’s unbelievable we’ve progressed to this point. Actually, it’s fantastic but not unbelievable. We have reached this point because many members of the thalassemia community have dedicated years of […]

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