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

TIF Schedules 4th Pan-European Conference

July 30, 2014 – TIF (Thalassaemia International Federation) has scheduled its 4th Pan-European Conference on Haemoglobinopathies and Rare Anaemias for November 7-9 in Athens, Greece. The Conference is held in collaboration with the Greek Thalassaemia Federation. Writing about the event on the Conference’s website (www.tif2014.org), TIF President Panos Englezos and Greek Thalassaemia Federation President Dr. [...]

Teens Lend Their Helping Hands to Fight Thalassemia

July 29, 2014 – Two amazing teen-age girls who until recently had never heard of Cooley’s anemia are now among our greatest allies in the fight against thalassemia. Amanda Rodriguez, 15, and Nairobi Mendez, 18, are friends who were living in Lodi, NJ. This spring, one of Amanda’s friends re-tweeted a post from Lisa Vigliotti [...]

Hepatitis C in Thalassemia: Q&A with Dr. Richard Ward

July 28, 2014 – The outlook for individuals living with thalassemia is better than it ever has been thanks to more choices for effective chelation. However, this brings with it medical concerns that patients previously did not face. One example of this is hepatitis C infection and the risks associated with it: liver cirrhosis (scarring) [...]

Cooley’s Anemia Foundation Announces Scholarship for Thalassemia Patients Pursuing Doctoral Studies

July 23. 2014 – The Cooley’s Anemia Foundation announced today a new scholarship program for U.S. individuals with a clinically significant form of thalassemia who have chosen to pursue postgraduate doctoral level studies in medicine or science. The “CAF-ApoPharma Distinguished Scholar Award” is made possible through a grant from pharmaceutical manufacturer ApoPharma, which is providing [...]

Bone Health Issues: Q&A with Dr. Richard Ward

May 6, 2014 - Your thalassemia nurse or physician is always reminding you how important it is to take the prescribed iron chelation medication every day, but there are other aspects of your health and wellbeing that are equally important to take care of if you or a loved one has thalassemia. This Q&A session with [...]

Why I Care Walk: Melissa Mannara

April 29, 2014 – Melissa Mannara is one of the captains of Team Jovi, which is organizing a wonderful Care Walk in Rochester on May 4.  (You can support it and learn more about it by clicking here!)  CAF spoke with Melissa about why she is putting so much effort into a Care Walk this [...]

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’s Northstar Study in Gene Transfer

bluebird bio, a Cambridge, MA- based biotechnology company, is sponsoring the Northstar Study, investigating gene transfer as a curative option for beta-thalassemia. More information about the study, including eligibility requirements, can be found at  http:///www.northstarstudy.com. The Northstar Study is now enrolling adults who are transfusion dependent and diagnosed with a beta thalassemia major. The goal [...]

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 [...]