Thalassemia Major

Important
It is possible that the main title of the report Thalassemia Major is not the name you expected. Please check the synonyms listing to find the alternate name(s) and disorder subdivision(s) covered by this report.

Synonyms

Beta Thalassemia Major
Cooley's Anemia
Erythroblastotic Anemia of Childhood
Hemoglobin Lepore Syndromes
Hereditary Leptocytosis, Major
Mediterranean Anemia
Microcythemia
Target Cell Anemia
Thalassemia, Major

Disorder Subdivisions

None

General Discussion

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 found in people living near the Mediterranean Sea. People with this disorder also have a reduced number of circulating red blood cells (erythrocytes). Thalassemia major is inherited as an autosomal recessive trait.
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Resources

March of Dimes Birth Defects Foundation
1275 Mamaroneck Avenue
White Plains, NY 10605
Tel: (914)997-4488
Fax: (914)997-4763
Tel: (888)663-4637
Email: Askus@marchofdimes.com
Internet: http://www.marchofdimes.com

Cooley's Anemia Foundation, Inc.
330 Seventh Avenue, #900
New York, NY 10001
USA
Tel: (212)279-8090
Fax: (212)279-5999
Tel: (800)522-7222
Email: info@cooleysanemia.org
Internet: http://www.cooleysanemia.org

Sickle Cell Disease Association of America, Inc.
231 East Baltimore Stree
Suite 800
Baltimore, MD 21202
USA
Tel: (410)528-1555
Fax: (410)528-1495
Tel: (800)421-8453
Email: scdaa@sicklecelldisease.org
Internet: http://www.sicklecelldisease.org

NIH/National Heart, Lung and Blood Institute Information Center
P.O. Box 30105
Bethesda, MD 20824-0105
Tel: (301)592-8573
Fax: (301)251-1223
Email: nhlbiinfo@rover.nhlbi.nih.gov

Children's Cancer & Blood Foundation
333 East 38th Street, Suite 830
New York, NY 10016-2745
Tel: (212)297-4336
Fax: (212)297-4340
Email: info@childrenscbf.org
Internet: http://www.childrenscbf.org/

Cochrane Cystic Fibrosis and Genetic Disorders Group
Institute of Child Health, University of Liverpool
Alder Hey Children's NHS Foundation Trust
Liverpool, L12 2 AP
United Kingdom
Tel: +44 (0) 151 252 5696
Fax: +44 (0) 151 252 5456
Email: nikkij@liverpool.ac.uk
Internet: http://www.cfgd.cochrane.org/en/index.html

MUMS National Parent-to-Parent Network
150 Custer Court
Green Bay, WI 54301-1243
USA
Tel: (920)336-5333
Fax: (920)339-0995
Tel: (877)336-5333
Email: mums@netnet.net
Internet: http://www.netnet.net/mums/

Sjældne Diagnoser / Rare Disorders Denmark
Frederiksholms Kanal 2, 3rd Floor
Copenhagen K, 1220
Denmark
Tel: 45 33 14 00 10
Fax: 45 33 14 55 09
Email: mail@sjaeldnediagnoser
Internet: http://www.raredisorders.dk

Genetic and Rare Diseases (GARD) Information Center
PO Box 8126
Gaithersburg, MD 20898-8126
Tel: (301)251-4925
Fax: (301)251-4911
Tel: (888)205-2311
TDD: (888)205-3223
Email: ordr@od.nih.gov
Internet: http://rarediseases.info.nih.gov/Default.aspx

Sickle Cell Disease Foundation of California
6133 Bristol Parkway #240
Culver City, CA 90230
Tel: (310)693-0247
Fax: (310)693-0266
Internet: http://www.scdfc.org

Anemia Institute for Research and Education
151 Bloor Street West
Suite 600
Toronto, Ontario, M5S 1S4
Canada
Tel: 416-969-7431
Fax: 416-969-7420
Tel: 877-992-6364
Email: info@anemiainstitute.org
Internet: http://www.anemiainstitute.org

For a Complete Report

This is an abstract of a report from the National Organization for Rare Disorders, Inc. ® (NORD). A copy of the complete report can be obtained for a small fee by visiting the NORD website. The complete report contains additional information including symptoms, causes, affected population, related disorders, standard and investigational treatments (if available), and references from medical literature. For a full-text version of this topic, see http://www.rarediseases.org/search/rdblist.html

The information provided in this report is not intended for diagnostic purposes. It is provided for informational purposes only. NORD recommends that affected individuals seek the advice or counsel of their own personal physicians.

It is possible that the title of this topic is not the name you selected. Please check the Synonyms listing to find the alternate name(s) and Disorder Subdivision(s) covered by this report

This disease entry is based upon medical information available through the date at the end of the topic. Since NORD's resources are limited, it is not possible to keep every entry in the Rare Disease Database completely current and accurate. Please check with the agencies listed in the Resources section for the most current information about this disorder.

For additional information and assistance about rare disorders, please contact the National Organization for Rare Disorders at P.O. Box 1968, Danbury, CT 06813-1968; phone (203) 744-0100; web site www.rarediseases.org or email orphan@rarediseases.org

Last Updated: 4/20/2008
Copyright 1986, 1987, 1990, 1992, 1993, 1994, 1995, 1997, 1999, 2000 National Organization for Rare Disorders, Inc.

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