June 9, 2020 – World Blood Donor Day is commemorated each June 14th in order to celebrate and thank blood donors, and to encourage more people to begin donating blood. This special day also helps to raise public awareness about the ongoing need for safe blood and lets people know how they can contribute. Many […]
June 5, 2020 – The American Society of Hematology (ASH) recently created a Research Collaborative (RC) COVID-19 Registry to collect de-identified data on patients with a positive COVID-19 diagnosis and a hematologic malignancy. This global Registry has now been expanded to accept data for COVID-19 patients with ANY hematologic condition, including thalassemia. Healthcare providers can […]
May 27, 2020 – The Thalassaemia International Federation (TIF) has developed a brief, 10-question survey to assess patients’ knowledge of and perspectives on Gene Therapy for Thalassemia. The survey is available in 6 languages (English, Hindi, Arabic, Italian, Greek and Turkish). For further information and to take the survey, please visit: https://thalassaemia.org.cy/news/surveys/gene-therapy-thalassaemia-version-2-3-a-tif-survey/
May 26, 2020 – Dr. Sujit Sheth, the Director of the Thalassemia Center at New York Presbyterian Hospital/Weill Cornell Medical Center, will be presenting a webinar entitled “Overview of Novel Thalassemia Treatments” on Thursday, June 18th from 2 PM-3 PM EST. This webinar is part of the Center for Disease Control and Prevention’s (CDC’s) Public Health Webinar […]
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 […]
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 […]
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 […]
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 […]
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 […]
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.) […]
