Month: May 2020

FDA Approves Twice-Daily Form of Ferriprox

A new formulation of the oral chelator Ferriprox, which is intended to be taken twice a day, has been approved for use in the United States by the U.S. Food and Drug Administration.  The previously approved formulation was to be taken three times daily; the new formulation eliminates the mid-day dose. “In the management of patients […]

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CDC Indicates that Thalassemia Patients are at Higher Risk for Severe Illness from COVID-19

May 12, 2020 – The Centers for Disease Control and Prevention (CDC) has issued revised guidance indicating that people with Hemoglobin Disorders – including thalassemia and sickle cell disease – may be at higher risk for severe illness from COVID-19. They suggest that patients with thalassemia: (1) Ask their healthcare providers about telemedicine or remote […]

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Rare Diseases Clinical Research Network Conducts Patient Survey

May 11, 2020 – The Rare Diseases Clinical Research Network (RDCRN) funded by NIH is conducting a survey to better understand how patients/caregivers with rare diseases have been impacted by the COVID-19 pandemic. This survey will provide an opportunity for rare disease patients and their caregivers to share their experiences to help researchers learn more […]

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CAF Celebrates International Thalassemia Day

May 8, 2020 – International Thalassemia Day is commemorated each May 8th in order to raise awareness about thalassemia. On this very special day for our community, we pause to remember our friends who are no longer with us. We also celebrate all patients who are trying to live their best lives while managing the […]

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After Giving Tuesday Now, It’s Thank You Wednesday!

May 6, 2020 – To all of you who participated in #GivingTuesdayNow yesterday, the Cooley’s Anemia Foundation gives you its deepest thanks. Whether you made a donation to CAF to help in this difficult time, helped to ensure a sufficient supply of blood during the pandemic, took time to recognize and thank all those brave […]

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Support CAF on Giving Tuesday Now – May 5

May 2, 2020 – A truly global threat like COVID-19 affects every person on the planet, and it presents an opportunity to come together as a global community. Here are ways you can give thanks and make a difference on May 5, #GivingTuesdayNow: Donate to the Cooley’s Anemia Foundation. (Click here to make a donation.) […]

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