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

Cooley’s Anemia Advocacy Forum Update: November 2015

November 4, 2015 – 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 […]

10th Cooley’s Anemia Symposium a Resounding Success

October 28, 2015 – A packed house of 240 clinicians, scientists, nurses, industry, consumers and other participants attended the 10th Cooley’s Anemia Symposium in Rosemont, IL from October 18-22. This invaluable meeting, presented by the Cooley’s Anemia Foundation (CAF) and the New York Academy of Sciences(NYAS)  is an anticipated and milestone event held only every […]

September 29 Webinar Will Focus on Clinical Trials

September 14, 2015 – The FDA (Food and Drug Administration) Office of Minority Health is holding a special webinar on Tuesday, September 29, entitled “Get to Know ClinicalTrials.Gov.” The webinar, which will run from 11:00 a.m. – 12:00 noon (EDT) is intended to explain what a person can expect to find on ClinicalTrials.gov and how […]

CAF Awards $195,000 Funding in Medical Research Fellowships

July 29, 2015 – Three new Cooley’s Anemia Foundation Medical Research Fellowships have been awarded for the 2015-2016 grant cycle. Combined with the three Fellowships which have been renewed from the previous cycle, the total amount of research funding for the current cycle comes to $195,000. The recipients were selected by members of the CAF […]

Slides from 2015 Patient-Family Conference

July 22, 2015 – This year’s Patient-Family Conference was a notable success, with much valuable information presented over the course of the two days. CAF is pleased to make available in pdf form some of the information presented at the Conference. In order to access the pdfs, click on the title of each presentation (below). […]

Download CAF Focus Group Report

July 21, 2015 – This spring, CAF sponsored a series of focus groups among 102 individuals with thalassemia and parents of individuals with thalassemia in order to better assess the needs and wants of the U.S. thalassemia community. We are happy to now share the results of this project, which was conducted by Stat One […]

Photos from 2015 Patient-Family Conference

  July 13, 2015 – This year’s CAF Patient-Family Conference was a great success.  One of the most wonderful things about these Conferences is the opportunity for so many members of the thalassemia community to get together and exchange experiences, talk and just have fun. Below are a few pictures (photos by Thatcher Hullerman Cook) […]

Patients Invited to Apply for CAF-ApoPharma Distinguished Scholar Award

June 22, 2015 – The Cooley’s Anemia Foundation is accepting applications from individuals with thalassemia for the 2015 CAF ApoPharma Distinguished Scholar Award. The CAF-ApoPharma Distinguished Scholar Award, which was established last year, is made possible through a grant from pharmaceutical manufacturer ApoPharma. CAF will award up to two scholarships to a U.S. citizen(s) with a clinically significant […]

Agenda for Patient Conference is Available

April 21, 2015 – The agenda for CAF’s 2015 Patient-Family Conference is available and can be downloaded by clicking here. For 2015, this always-anticipated annual event will be held June 26-28 at the Wyndham Hamilton Park Hotel and Conference Center in Florham Park, NJ.  Entitled “Celebrating Self-Empowerment,” the 2015 Conference is a unique opportunity for […]

Novartis Announces Approval of Jadenu

April 1, 2015 – Novartis announced that the Food and Drug Administration (FDA) has approved Jadenu (deferasirox) tablets for the treatment of chronic iron overload due to blood transfusions in patients  2 years and older, and for chronic iron overload in non-transfusion-dependent thalassemia syndromes (NTDT) in patients 10 years and older. Jadenu is a new […]