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

Register Now for 2014 CAF Patient~Family Conference!

February 27, 2014 – Registration is now open for CAF’s 2014 Patient~Family Conference!  This amazing annual event will be held June 20-22 at the Intercontinental Chicago-O’Hare Hotel in Rosemont, Il. Entitled “Perspectives & Strategies for Thalassemia Care & Curative Options,” the Conference is a unique opportunity for any individual with thalssemia and their family members [...]

Adherence Strategies: Q&A with Dr. Richard Ward

February 13, 2014 -The Cooley’s Anemia Foundation often gets questions and comments concerning strategies for remaining adherent to thalassemia treatments. We have asked Dr. Richard Ward of Toronto General Hospital to respond to some of these questions.  CAF thanks Dr. Ward for taking the time to share his knowledge and experience with us and with [...]

bluebird bio Announces First Patient Transplanted in Phase 1/2 HGB-205 Study for the Treatment of Beta-Thalassemia and Sickle Cell Anemia

December 2, 2013 – bluebird bio, Inc. today announced that the first subject with beta-thalassemia major has been enrolled in its phase 1/2 HGB-205 study in France and has undergone infusion with bluebird bio’s LentiGlobin drug product in an autologous hematopoietic stem cell transplantation. “We believe gene therapy represents a potentially new and exciting treatment [...]

Company Developing Iron Chelator Completes Equity Financing & Signs Agreement with Novartis

October 22, 2013 - Sideris Pharmaceuticals, Inc., privately held biopharmaceutical company that is focused on development of therapeutics for the treatment of transfusion-related iron overload, made an announcement today which indicates forward movement in bringing a potential new iron chelating option to important clinical trials. The company, which is developing the iron chelator designated as SP-420, has [...]

CAF Hits the Airwaves – Listen Here

October 15, 2013 – Representatives of the Cooley’s Anemia Foundation were spreading important information about thalassemia on two prime radio programs  last week and through a special Columbus Day Parade appearance. On October 10, CAF Board Member Amy Celento was the special guest of Dr. Nieco Goldberg on her program, “Beyond the Heart.”  Amy is [...]

CAF Posts New “Guide to Living with Thalassemia” for Download

September 27, 2013 – CAF is pleased to make available to the thalassemia community an important new publication, A Guide to Living with Thalassemia, which can be downloaded by clicking here.  (Please note that this document is 115 pages and may take some time to download.) A Guide to Living with Thalassemia is designed to provide [...]

Cooley’s Anemia Foundation Recognized as Thalassemia Society of Excellence

September 17, 2013 – The Cooley’s Anemia Foundation (CAF) is proud to announce that it has been selected to receive the prestigious Sultan Bin Khalifa International Award for Thalassaemia Society of Excellence. His Highness Sultan Bin Khalifa Al Nahyan of the United Arab Emirates has named CAF to receive this first Thalassemia Society of Excellence Award at the Thalassaemia International [...]

School Toolkit for Thalassemia Now Available for Download

August 21, 2013 – If you or your child needs to talk with school personnel about your experience with thalassemia and how it may impact attendance or schoolwork, CAF has a new publication that can help: The School Toolkit for People with Transfusion-Dependent Thalassemia. Over the years, the Cooley’s Anemia Foundation has heard from some patients [...]

MRI For Iron: What to Expect

August 14, 2013 – Thanks to advances in technology, more and more people with thalassemia are able to utilize MRI (magnetic resonance imaging) to get an assessment of whether iron is affecting their livers or hearts. In order to help patients prepare for these MRI-based tests, CAF, as part of a collaborative agreement with the Centers [...]

Healthy People 2020 Webinar on Blood Disorders is August 28

August 13, 2013 – Healthy People 2020 will host a special webinar on “The Impact of Systems Improvements: A Progress Review Webinar on Healthcare-Associated Infections & Blood Disorders and Blood Safety” on Wednesday, August 28, from 1:00-3:00 p.m. EDT. Join HHS Assistant Secretary for Health, Dr. Howard Koh, and experts from the field on Wednesday, [...]