I am a person with thalassemia

Welcome to the Cooley’s Anemia Foundation website!  The Cooley’s Anemia Foundation  exists to help individuals with thalassemia meet the challenges that are associated with living with this blood disorder.  (You can read about our mission and purpose by clicking here.)

Below are some links that may be of interest to individuals with thalassemia.

About Thalassemia

Clinical Trials in Thalassemia

Blood Safety

Thalassemia Treatment Centers

Downloadable Publications

News items of interest

CAF Applauds Advances in Thalassemia Reported at Annual Hematology Meeting

December 11, 2014 – Exciting data from studies looking at new treatments for thalassemia presented at the annual meeting of the American Society of Hematology builds upon science supported by the Cooley’s Anemia Foundation and gives hope for the development of significant new treatments for the genetic blood disorder known as thalassemia. Two of the [...]

Patient to Tweet About Tranfusions on December 3

December 1, 2014 – Alicia Somma, a member of the thalassemia community, will tweet about the transfusion experience on CAF’s Twitter account (@cooleysanemia) on Wednesday, December 3. CAF asked Alicia to tweet throughout the day as she gets one of her regular transfusions, in order to let people have a better idea of what is [...]

TIF Launches “ThaliMe” App for Thalassemia Patients

November 25, 2014 – The Thalassemia International Federation (TIF) is taking on a new project to develop and deploy an innovative mobile program to greatly aid and improve the lives of people living with thalassemia. The envisioned program, delivered via mobile app, has the potential to reach millions of people around the world living with this [...]

Blood Q&A with Dr. Eldad Hod

  November 19, 2014 –  CAF periodically receives questions from patients on a wide range of topics related to thalassemia and its treatment. We have shared a few of these questions relating to blood issues with Eldad A. Hod, MD, of Columbia University/New York-Presbyterian.  We thank Dr. Hod for sharing his expertise with us and with [...]

CAF Announces Recipients of Distinguished Scholar Award

November 17, 2014 – The Cooley’s Anemia Foundation is pleased to announce that Robert Mannino and Grace Tsai have been named recipients of the first CAF-ApoPharma Distinguished Scholar Award.  The Award is presented to U.S. individuals with a clinically significant form of thalassemia who have chosen to pursue postgraduate doctoral level studies in medicine or [...]

Q&A with Dr. Jeanne Boudreaux

November 9, 2014 – CAF periodically receives questions from patients on a wide range of topics related to thalassemia and its treatment. We have shared a few of these questions with Jeanne Boudreaux, MD, of Children’s Healthcare of Atlanta.  We thank Dr. Boudreaux for sharing her expertise with us and with the thalassemia community. If [...]

Nutrition for Thalassemia Q&A with Dr. Ellen Fung

October 31, 2014 – CAF periodically receives questions from patients on a wide range of topics related to thalassemia and its treatment, including diet and nutrition. We have shared a few of these questions with Ellen Fung, PhD, RD, of Children’s Hospital Oakland Research Institute.  Dr. Fung has advanced training in nutrition and a long-standing [...]

Cooley’s Anemia Advocacy Forum Update – October 17

October 17, 2014 – The Cooley’s Anemia Advocacy Forum (CAAF) is a Cooley’s Anemia Foundation project aimed at helping thalassemia patients and families learn how to make their voices heard on federal issues of importance to the thalassemia community.  (A brochure about CAAF can be downloaded by clicking here.)  Following is a report from Lyle Dennis [...]

Q&A with Dr. Ellis Neufeld

October 16, 2014 – CAF periodically receives questions from patients on a wide range of topics related to thalassemia and its treatment.  We have shared a few of these questions with Dr. Ellis J. Neufeld, the Chair of CAF’s Medical Advisory Board and Associate Chief, Division of Hematology/Oncology at Boston Children’s Hospital. Dr. Neufeld has kindly [...]

Patient Panel Explores Living with Thalassemia

October 9, 2014 – One of the most praised presentations at this year’s CAF Patient~Family Conference was the patient panel, during which several patients shared their experiences in living with thalassemia. Among this year’s participants were Aaron Cheng, Anish Goel, Chi Pham and Jaimee Versace. “In my presentation, I emphasized how important it is for [...]