Sickle/Thalassemia/Hemochromatosis Web Sites





Sickle Cell Disease

Greater Boston Sickle Cell Disease Association, Inc.

 Emory University Sickle Cell Center
This Web Site has a wealth of useful information on sickle cell disease, including an electronic version of the treatment guidelines booklet authored by James Eckman, M.D. and Alan Platt, P.A. In addition, the NIH consensus guideline book on the treatment of sickle cell disease is online at this site.

 NIH Guidelines- Management and Therapy of Sickle Cell Disease
The National Heart, Lung and Blood Institute has a 3d edition of its guidelines on the Management and Treatment of Sickle Cell Disease. The information is based on the work and opinions of experts in the treatment of sickle cell disease, and is the most comprehensive collection of its kind. The Adobe PDF file is available for downloading and can be viewed and printed with the Adobe Acrobat Reader (available free and online).
 

University of Rochester Division of Genetics
This site provides a wealth of information on hemoglobin disorders. Brochures exist in Adobe PDF file format as well as HTML.

 The Sickle Cell Disease Association of America
The Sickle Cell Disease Association of America is a non-profit patient support and advocacy group. Regional chapters exist around the U.S. The organization was founded 27 years ago, and currently maintains its national headquarters in Culver City, California.


 
 

Thalassemia

 Cooley's Anemia Foundation
The Cooley's Anemia is the largest non-profit organization working for the health of people with thalassemia. The Web Site includes information as well as links to patient advocacy groups.
 
 

 Children's Hospital of Oakland- Thalassemia Center
 The Children's Hospital of Oakland has one of the largest treatment centers in the U.S. for patients with thalassemia. The web site provides one of the most comprehensive reviews of thalassemia that is available.


 
 

Hemochromatosis

 Iron Overload Diseases Association, Inc.
The Iron Overload Diseases Association, Inc. is the oldest advocacy organization for patients with iron overload conditions. This non-profit organization, founded by Roberta Crawford, has its headquarters in North Palm Beach, Flordia. The organization has worked with providers, patients, insurance companies and governmental organizations for 20 years in an effort to improve the care of people with disorders that produce iron overload.

 The American Hemochromatosis Society
The American Hemochromatosis Society, Inc. (AHS), was founded by Sandra Thomas, a nationally recognized advocate for hemochromatosis patients, who is a carrier of the hemochromatosis mutation. AHS is a 501 (c) 3 non-profit corporation based in Delray Beach, Florida, U.S.A.
AHS is dedicated to providing the latest information on genetic testing for hereditary hemochromatosis, pediatric hereditary hemochromatosis, and research relating to hereditary hemochromatosis/iron overload.

 Hemochromatosis Foundation, Inc.
A brief explanation of hemochromatosis with updates on relevant legislative activity concerning hemochromatosis.

National Heart, Lung and Blood Institute

 The National Heart, Lung and Blood Institute is the major division of the National Institutes of Health that deals with blood-related disorders. The Institute Home Page has information on the disorders, grants and research, and links to relevant other sites.


 
 

General Medical Resource Information

The Cochrane Collaboration "is a non-profit making organisation made up of an international network of health care professionals, researchers and consumers. We prepare, maintain and distribute systematic reviews of randomised control trials of treatment and interventions for disorders within our field, including sickle cell disease and thalassaemia."

 Dr. MedMarketis a clearinghouse site for a wide variety of medical information and service Web sites. Several hundred sites are listed, along with a brief description of the information available at each site.

Boston Childrens Hospital has a wealth of information for patients and famlies with sickle cell and thalassemia.

 Sickle Cell Disease 

 Thalassemia  

 Congenital Sideroblastic Anemia  

 Iron-refractory Iron Deficiency Anemia (IRIDA) 

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