I want more information about Thalassemia

Thalassemia is the name of a group of genetic blood disorders.  Click on the links below to find out more.

Basic Description of Thalassemia  (This is a good place to start)

Information about Thalassemia Trait

Information About Beta Thalassemia Major

Information About Beta Thalassemia Intermedia

Information About Alpha Thalassemia

 Information About Hemoglobin H (a form of Alpha Thalassemia)

Information About Hemoglobin E/E Beta Thalassemia

 

If you want to receive regular information from the Cooley’s Anemia Foundation about thalassemia and our efforts to fight this blood disorder, please click here.

Although thalassemia can have a wide range of severity, all forms except thalassemia trait/minor are considered clinically significant.  If you are an individual with a clinically significant form of thalassemia and require information, please contact our Patient Services Manager, Eileen Scott, at eileen.s@cooleysanemia.org or (212) 279-8090 x 205.

 

 

 

News items of interest

The Man Behind the Name: Thomas Benton Cooley, M.D.

September 19, 2016 – People often ask why the major form of beta thalassemia is known as Cooley’s anemia. Beta thalassemia major is widely referred to as Cooley’s anemia in reference to Dr. Thomas Benton Cooley, the renowned researcher who discovered the disorder. Thomas Benton Cooley was an American physician specializing in pediatrics and hematology. […]

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 […]

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 […]

Check Out These TIF Publications

May 31, 2013 – CAF is proud to be part of the international thalassemia community and of the Thalassaemia International Federation (TIF). While thalassemia affects a relatively small population here in the United States, its global impact is substantial:   In some parts of the world, carrier rates can be astonishingly high, with some regions of […]

Links

Click on the links below for more information that may be of interest to the thalassemia community. Thalassaemia International Federation (TIF) October 2013 TIF Conferences    

Iron Levels – How Low Can You Go Presentation

January 28, 2013 – CAF is pleased to share the information from selected presentations from the 2012 CAF Patient~Family Conference.   We are posting here the presentation on “Iron Levels: How Low Can You Go?”  More videos will be posted as they become available. Stay  tuned for information on the 2013 Patient~Family Conference.  It will be […]

Video of Bone Health Presentation from Patient~Family Conference

November 19, 2012 – CAF is pleased to share the information from selected presentations from the 2012 CAF Patient~Family Conference.   We are posting here the presentation on “Improving Bone Health in Patients with Thalassemia.”  More videos will be posted as they become available.   Check back at this website for information on the 2013 Patient~Family […]

View Nutrition Presentation from 2012 Patient~Family Conference

November 13, 2012 – CAF is pleased to share the information from selected presentations from the 2012 CAF Patient~Family Conference.   Because we have recently received questions concerning nutrition, we are posting here the presentation on “Recommendations for Dietary Intake: Focus on Micronutrients.”  More videos will be posted as they become available. Check back at this […]

U.S. Gene Therapy Trial for Thalassemia Receives FDA Approval

July17, 2012 Memorial Sloan-Kettering Cancer Center will begin evaluating a new stem-cell-based gene therapy for patients with the inherited blood disorder beta (β)-thalassemia. The clinical trial is the first to receive US Food and Drug Administration approval to treat this disease with genetically engineered cells and is a culmination of more than two decades of […]

Questions on Thalassemia Syndromes: Intermedia and Hemoglobin H

February 1, 2012 – CAF Medical Advisory Board Chair Ellis Neufeld, MD, answers some of the questions which have been forwarded to CAF by individuals with thalassemia intermedia. CAF:  Why don’t intermedias qualify for bone marrow transplants, even if the diagnosis changes to major? EN:  Bone marrow transplantation can be a dangerous endeavor, and the […]