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The information contained in the Organizational Database (ODB) is provided for informational purposes only. There is no implied endorsement by NORD. NORD does not promote or endorse participation in any specific organization. The information is subject to change without notice. Every effort is made to ensure that the details for each entry are as current as possible.

Thalassemia Action Group (Deleted)

a/k/a: TAG

Address

c/o Cooley's Anemia Foundation
330 Seventh Avenue 900
New York, NY 10001
USA

Fax

212-279-5999

800 Number

800-522-7222

TDD

--

Email Address

info@cooleysanemia.org

Chapters

15

Website

http://www.cooleysanemia.org

The Thalassemia Action Group (TAG), a non-profit organization, is the official patient support group of the Cooley's Anemia Foundation (CAF). Thalassemia major is a rare blood disorder characterized by a marked increase in F hemoglobin and a decrease in the production of certain oxygen-carrying proteins in red blood cells (beta polypeptide chains in the hemoglobin molecule). Thalassemia major is the most severe form of chronic familial anemias that result from the premature destruction of red blood cells (hemolytic). This disease was originally described in people living near the Mediterranean Sea. Individuals with this disorder also have a reduced number of circulating red blood cells (erythrocytes). Thalassemia minor is a rare inherited blood disorder characterized by a moderately low level of hemoglobin (anemia) in red blood cells. People with thalassemia minor have one of a pair (heterozygous) of the thalassemia gene. People with two copies of the disease gene, will have thalassemia major, which is a more serious disease. In most affected individuals, the only symptom of thalassemia minor may be persistent fatigue. TAG's mission is providing affected individuals and their family members with a channel of communication and information. It hosts an annual patient and parent conference, engages in advocacy and organizes special events and opportunities for affected individuals to network.

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