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Information and Resources
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.
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 7th Ave
Suite 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 Street
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
P.O. Box 30105
Bethesda, MD 20892-0105
Tel: (301)592-8573
Fax: (301)251-1223
Email: nhlbiinfo@rover.nhlbi.nih.gov
Internet: http://www.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: +44 151 252 5696
Email: nikkij@liverpool.ac.uk
Internet: http://cfgd.cochrane.org
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/
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: http://rarediseases.info.nih.gov/GARD/EmailForm.aspx
Internet: http://rarediseases.info.nih.gov/GARD
Sickle Cell Disease Foundation of California
6133 Bristol Parkway #240
Culver City, CA 90230
Tel: (310)693-0247
Fax: (310)693-0266
Tel: (877)288-2873
Email: info@scdfc.org
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
Thalassemia Support Foundation
PO Box 26398
Santa Ana, CA 92799
Tel: (800)846-8076
Email: tsf@helpthals.org
Internet: http://www.helpthals.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.
WebMD Medical Reference from the National Organization of Rare Disorders
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