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 – 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 [...]

Gene Therapy Update

October 7, 2014 – Gene therapy and gene editing continue to hold promise as a potential curative approach for people with thalassemia. In recent years, genetic-based approaches to thalassemia have begun moving from animal studies into early stage clinical trials involving human subjects. Memorial Sloan-Kettering One of these trials, a Phase 1 study entitled “ß-Thalassemia [...]

Go Get ‘Em, Tiger! One Patient’s Approach to Thalassemia

October 4, 2014 – Marsha DeSalvatore understands the saying about making lemonade when life hands you lemons; this talented and vivacious woman has learned to use the fact that she has thalassemia as a way to express herself through comedy and improvisation. In doing so, she helps herself and educates others about what it means [...]

Cooley’s Anemia Advocacy Forum Update: CAF Meets with Government Agencies

October 2, 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.)  The following report comes from Lyle [...]

Deadline for Distinguished Scholar Award Applications Extended to October 15

September 16, 2014 – The Cooley’s Anemia Foundation is extending the application deadline for its first CAF-ApoPharma Distinguished Scholar Award to October 15, 2014. The new scholarship program for is U.S. individuals with a clinically significant form of thalassemia who have chosen to pursue postgraduate doctoral level studies in medicine or science. The award is [...]

Thalassemia Patient Authors “Transfusion: A Patient Survival Guide”

September 9, 2014 – Josephine Bila, an individual with thalassemia, has written a book, “Transfusion: A Patient Survival Guide.” CAF speaks with Jo about this project below. CAF: Tell us a little about “Transfusion: A Patient Survival Guide.”  What motivated you to write it, what is it about, etc.? Jo:  I was born with beta [...]

CAF Works to Enhance HRSA’s Focus on Thalassemia

September 2, 2014 – Through a series of meetings, phone calls, and “listening sessions,” the Cooley’s Anemia Foundation (CAF) has been working diligently for months to assure that the Health Resources and Services Administration (HRSA), which is an agency of the U.S. Department of Health and Human Services, fully understands and appreciates the complications that [...]

New Story Added to CDC Thalassemia Flickr Album

August 27, 2014 – The Centers for Disease Control and Prevention  (CDC)’s social media platform on Flickr has added a new photo and story to its “Personal Stories of People Living with Thalassemia.” The new photo and story, which focuses on Jasvinder Singh, can be viewed by clicking here.  The entire album can be accessed [...]