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Thalassemia (cont.)

IN THIS ARTICLE

FAQs

Getting treatment:

Other Places To Get Help

Organizations

Centers for Disease Control and Prevention (CDC): Blood Disorders
1600 Clifton Road MS E-87
Atlanta, GA 30333
Phone: 1-800-CDC-INFO (1-800-232-4636)
Email: cdcinfo@cdc.gov
Web Address: www.cdc.gov/ncbddd/blooddisorders/index.html

The Centers for Disease Control and Prevention (CDC) helps promote and improve the health of people with certain blood disorders. The CDC promotes research, provides education to patients and health professionals, and promotes prevention programs.


Cooley's Anemia Foundation
330 Seventh Avenue
Suite 900
New York, NY 10001
Phone: 1-800-522-7222
Fax: (212) 279-5999
Email: info@cooleysanemia.org
Web Address: www.cooleysanemia.org

Cooley's Anemia Foundation is a nonprofit organization dedicated to serving people afflicted with various forms of thalassemia, most notably the major form of this genetic blood disease, Cooley's anemia (thalassemia major). The foundation's mission is to advance the treatment and cure for thalassemia, enhance the quality of life of people who have it, and educate the medical profession, trait carriers, and the public about this fatal blood disease. The foundation encourages donations of blood, since thalassemia patients are the single largest users of blood supplies in the nation, and also sponsors chapters and support groups.


Iron Disorders Institute
P.O. Box 675
Taylors, SC 29687
Phone: 1-888-565-IRON (1-888-565-4766)
(864) 292-1175
Fax: (864) 292-1878
Email: patientservices@irondisorders.org
Web Address: www.irondisorders.org

The Iron Disorders Institute is a national voluntary health agency that provides information about iron disorders such as hemochromatosis, acquired iron overload, sickle cell anemia, thalassemia, iron deficiency anemia, and anemia of chronic disease. The organization works with a scientific review board as well as various medical professional groups. A free newsletter, idInsight, is available.


National Heart, Lung, and Blood Institute (NHLBI)
P.O. Box 30105
Bethesda, MD 20824-0105
Phone: (301) 592-8573
Fax: (240) 629-3246
TDD: (240) 629-3255
Email: nhlbiinfo@nhlbi.nih.gov
Web Address: www.nhlbi.nih.gov

The U.S. National Heart, Lung, and Blood Institute (NHLBI) information center offers information and publications about preventing and treating:


National Human Genome Research Institute, National Institutes of Health (NIH)
NIH Building 31, Room 4B09, 31 Center Drive
MSC 2152, 9000 Rockville Pike
Bethesda, MD 20892-2152
Phone: Phone: (301) 402-0911
Fax: (301) 402-2218
Web Address: www.genome.gov

The National Human Genome Research Institute (NHGRI) supports genetic and genomic research, investigation into the ethical, legal, and social implications surrounding genetics research, and educational outreach activities. (Genome refers to a complete gene sequence in a organism.) NHGRI also supports the training of investigators and provides genome information, including fact sheets and school materials, to the public and to health professionals.


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