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Rare Diseases
 Websites presented in alphabetical order MedlinePlus: Progeria 
 Information about this disease, also called Hutchinson-Gilford syndrome, "that produces rapid aging, beginning in childhood" and for which there is no known prevention or cure. Includes an overview of the disease, symptoms, and information about a support group. From the National Library of Medicine (NLM) and the National Institutes of Health (NIH). http://www.nlm.nih.gov/medlineplus/ency/article/001657.htm Topics: Diseases & Conditions Last updated Dec 8, 2005 National Organization for Rare Disorders (NORD)
"NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service." Search the Rare Disease Database or browse an alphabetical listing for descriptions of the disease, or find a support group or other source of help in the Organizational Database. Reports are available for a fee. http://www.rarediseases.org/ Topics: Diseases & Conditions Last updated May 30, 2004 Office of Rare Diseases
Information on more than 6,000 rare diseases and conditions, including current research and clinical trials, journal articles, reports, patient support groups, and scientific conferences. Provides links to related research sites on genetic diseases. Some information is available in Spanish. From the National Institutes of Health (NIH). http://rarediseases.info.nih.gov/ Topics: Diseases & Conditions, Drugs, Medical Treatments & Devices Last updated Sep 20, 2005 Orphanet
Compilation of material about rare diseases and the "so-called 'orphan drugs' [which] are intended to treat diseases so rare that sponsors are reluctant to develop them under usual marketing conditions." Browse resources on rare diseases and orphan drugs (such as encyclopedias, newsletters, and clinical trials) for patients, professionals, industry, and organizations. Also available in French, German, Italian, and Spanish. From a consortium of European partners. http://www.orpha.net/consor/cgi-bin/index.php?lng=EN Topics: Diseases & Conditions, Drugs Last updated Apr 27, 2009 Sirenomelia (Mermaid Malformation)
Collection of links to sites relating to sirenomilia, a rare birth defect in which the legs are fused together, giving the baby the appearance of a mermaid. Note: Some linked sites include graphic photos. From the Birth Disorder Information Directory, a site that sells books about birth defects. http://www.bdid.com/sirenomelia.htm Topics: Diseases & Conditions Last updated Oct 2, 2006 UCSF-Stanford Lysosomal Disease Center
This site provides general information about the rare lysosomal diseases such as Gaucher disease, Fabry disease, Hurler syndrome, and Niemann-Pick disease. "These inherited diseases are caused by problems in the lysosomes, compartments in the body's cells that contain enzymes (chemicals that break down other substances)." Also features newsletters from the center. From Stanford University and the School of Medicine at the University of California, San Francisco. http://www.medschool.ucsf.edu/Lysosomal/ Topics: Diseases & Conditions Last updated Sep 6, 2006 Undiagnosed Diseases Program
Details about this National Institutes of Health program (launched in May 2008) to help patients with undiagnosed diseases by providing "answers to patients with mysterious conditions that have long eluded diagnosis and ... [advancing] medical knowledge about rare and common diseases. Features information for patients and care providers, a FAQ, a press release and audio announcing the program, and related material. From the National Institutes of Health Office of Rare Diseases. http://rarediseases.info.nih.gov/Resources.aspx?PageID=31 Topics: Diseases & Conditions Last updated Jun 2, 2008 |
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