Tag: Thal Pals

Agios drug reduces blood transfusions in patients with beta-thalassemia (early press release)

*IMPORTANT: The following information is a press release that has been released in advance of the date being presented for peer review* Agios Pharmaceuticals announced Monday that its drug Pyrukynd (mitapivat), an oral pyruvate kinase activator, reached its primary endpoint in a Phase III trial evaluating adults with the blood disorder transfusion-dependent alpha- or beta-thalassemia. […]

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Care Walk 2024 Location Directory

Here are a list of Care Walk Locations! Care Walk is the Cooley’s Anemia Foundation’s annual fundraising event and opportunity to bring together the thalassemia community and its supporters around the country. Funds raised support medical research to fight thalassemia, a genetic blood disorder, as well as patient support services for thalassemia patients across the country. Your Walk, Your Way, […]

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Registration Now Open for 2024 Patient-Family Conference

The Cooley’s Anemia Foundation is pleased to announce that the 2024 Patient-Family Conference will be held from July 12-14 at the Renaissance Concourse Atlanta Airport Hotel. During registration, you will have the option to choose whether you would like to attend in person or virtually. If you choose to attend virtually, only the sessions on […]

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Thalassemia Care Walk 2024 – Information

Care Walk is the Cooley’s Anemia Foundation’s annual fundraising event and opportunity to bring together the thalassemia community and its supporters around the country. Funds raised support medical research to fight thalassemia, a genetic blood disorder, as well as patient support services for thalassemia patients across the country. Click here to register for Care Walk!! […]

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Agios Launches Advocacy Advisory Council for Thalassemia, PK Deficiency, SCD

The council will bring together patients, caregivers and physicians from these communities, which share commonalities in underlying disease pathology, difficulties in transitioning from pediatric to adult care and quality of life concerns.

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Thal Pals Comic Strip #26

November 24, 2009 – Vikram holds a special Thanksgiving party. Happy Thanksgiving from the Cooley’s Anemia Foundation! With this episode of Thal Pals, our year-long online comic strip comes to an end. If you’ve enjoyed the comic and would like to see new episodes, write c.butler@cooleysanemia.org and let us know. {pollxtbot id=3} […]

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Thal Pals Comic #25

November 5, 2009 – Vikram’s cousin comes for his first comprehensive care evaluation.   Next episode will be posted on 11/23/09. Want More Information About Thalassemia Treatment Centers? Click here to download a pdf brochure and learn about this team approach to thalassemia. What’s Involved in a Comprehensive Care Evaluation? Click here to […]

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Thal Pals Comic #24

October 12, 2009 – Perry wants to give blood for his friend Vikram. Next episode will be posted on 11/05/09. Quick Blood Facts * Someone in the U.S. requires a life-saving transfusion every 3 seconds. * Each donation of blood can help save 3 lives. * 60% of Americans are eligible to donate blood, […]

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Thal Pals Comic #23

September 28, 2009 – Helena tells Thuc about CAF’s Patient Incentive Awards. Next episode will be posted on 010/12/09. What Are CAF Patient Incentive Awards? DID YOU KNOW…? CAF’s advocacy efforts resulted in the establishment of the Thalassemia Clinical Research Network (TCRN). 2009-2010 Patient Incentive Awards are available to thalassemia patients currently enrolled in […]

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Thal Pals Comic #22

September 14, 2009 – Thuc and Vikram talk about thalassemia and pain. Want to Learn More About the Assessment of Pain in Thalassemia Study? Vikram and Thuc are discussing an actual study to look into the issue of pain in thalassemia. You can learn more about the study by clicking here! Next episode […]

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