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. MedMarket is 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.
