revised February 15, 1999
Support and Information Services for Patients with Thalassemia
This document lists some of the organizations that provide support services for patients with thalassemia. The organizations listed are primarily non-government. Their aim is to provide support for patients affected by thalassemia and their families.
The Cooley's Anemia Foundation
Cooley's anemia strictly refers to the severe beta-thalassemia initially described by Dr. Thomas Cooley. However, the Cooley's Anemia Foundation serves people with all forms of thalassemia. The foundation was formed in 1954 by a group of parents of children affected with the condition. It is now the largest non-profit support organizaiton for patients with thalassemia in the United States. The organization has worked effectively with members both of the medical and political communities to bring the problems of patients to the forefront of attention. The organization sponsors a number of grants for investigators who work on problems directly relevant to thalassemia.
The Thalassemia International Federation
One of the major efforts of the organization is helping patients and families newly diagnosed with thalassemia to work their way through what is sometimes a maze of medical and insurance barriers to appropriate treatment. The Thalassemia Action Group (TAG) is a dedicated spin-off patient advocacy group.
The Cooley's Anemia Foundation, Inc.
129-09 26th Avenue #203
Flushing, NY 11354
(718) 321-CURE (2873)
(718) 321-3340 (FAX)
Web Site: http://www.thalassemia.org
The Thalassemia International Federation is an umbrella organization whose member groups hail from many different countries and are devoted to the welfare of patients with thalassemia . The Federation provides information on local organizations for patients around the world. It also sponsors a number of international conferences on thalassemia in different parts of the world.
Thalassemia International Federation
Philippou Hadjigeorgiou 1, Flat 8
P.O. Box 8503
Telex: 2011 PANOS CY
Telex: 5293 AQUARIUS CY
Tel: (02) 319129
Fax: (02) 314552