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| Index of Diseases and Conditions: A B C D E F G H I J K L M N O P Q R S T U V W X Y Z |
A disease is rare if fewer than 200,000 people in the United States have it. There are close to 7,000 rare diseases and about 25 million people in the U.S. have one. Many rare diseases are caused by changes in genes and are called genetic diseases.
National Institutes of Health Office of Rare Diseases
A '''rare disease''' has such a low prevalence in a population that a physician in a busy general practice would not expect to see more than one case a year. Rare diseases, including those of genetic origin, are life-threatening or chronically debilitating diseases which are of such low prevalence that special combined efforts are needed to address them. As a guide, low prevalence is taken as prevalence of '''less than 5 per 10,000 in the Community''' [http://europa.eu.int/comm/health/ph_information/documents/ev20040705_rd05_en.pdf]. Rare diseases will vary from population to population, as a disease that is rare in some populations may be common in another. This is especially true of some genetic and infectious diseases. For example, cystic fibrosis is a rare genetic disease in most parts of Asia but is relatively common in some Eurasian populations. Many infectious diseases, such as tropical diseases, are rare outside a given geographic area. See also List of diseases.
Quentin Kenihan - Official site of the Australian celebrity that suffers from a rare bone disease.
Zebra Cards: An Aid to Obscure Diagnosis - Zebra is frequently equated with a rare disease or condition. Book for students and medical professionals. Updates the classic medical publication which is available for purchase.
Jasmin Ariel Creations - Purchases help fund FOP research - a rare bone disease. Also, soap and candles.
Gene Analysis Service GmbH - Molecular biological and medical diagnostic service laboratory. Mutation screening by DNA sequencing for the detection of rare genetic diseases.
OHSU Genetic Service Laboratories - Provide laboratory testing and diagnostic evaluation of rare and unusual inherited metabolic diseases. Includes information on the faculty, education, research, and related resources.
Linz-MediConsult - Provides medical consultation and detailed searches on serious or rare diseases; services include consultation, seminars and advanced training seminars within the ranges biomedicine, molecular biology, biochemistry.
Genzyme Corp. - Products targeted on rare inherited disorders, kidney disease, orthopaedics, transplant and immune disease, cancer, and diagnostic testing. Includes links to global subsidiaries, headquartered from Cambridge, Massachusetts (Nasdaq: GENZ)
Thyroid Cancer Songbook - Thyroid cancer survivor, Megan Stendebach, shares humor and songs about living with this rare disease.
Alliance Against Alveolar Soft-Part Sarcoma - Non-profit offers information regarding this rare disease including treatment options, news, links, patient registry and discussion forum.
The Rare Chair Affair - Annual fundraising event hosted by the Wisconsin Breast Cancer Coalition to raise money and awareness for its programs toward eradicating the disease.