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Office of Rare Diseases
Office of Rare Diseases: Information on more than 6000 rare diseases, including current research, publications from scientific and medical journals, completed research, ongoing studies, and patient support groups. (Rare Disorders)
http://rarediseases.info.nih.gov/ord/ |
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Nomid /Cinca
Nomid /Cinca: Resource for parents and patients suffering from Neonatal Onset Multi-inflammatory Disease Chronic, or Infantile, Neurologic, Cutaneous and Articular syndrome. Site maintained by patients, parents and friends for their counterparts worldwide. Email suppo (Rare Disorders)
http://pweb.netcom.com/~jkbarton/nomid/Html/nomid_home_page.htm |
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Fibrous Dysplasia Support Online
Fibrous Dysplasia Support Online: For those seeking support and information concerning the rare bone diseases: fibrous dysplasia, McCune Albright Syndrome and Cherubism. (Rare Disorders)
http://members.cox.net/fdsupport/index.html |
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Cherubs
Cherubs: A non-profit support group for the families and medical care providers of children and adults born with Congenital Diaphragmatic Hernia. (Rare Disorders)
http://www.cherubs-cdh.org |
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Tetrahydrobiopterin
Tetrahydrobiopterin: Information on structure, biosynthesis and pathophysiology of BH4 and tetrahydrobiopterin deficiency. (Rare Disorders)
http://www.bh4.org |
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Human Growth Foundation
Human Growth Foundation: Information about growth-related disorders through education, research, and advocacy. Member driven organization. (Rare Disorders)
http://www.hgfound.org/ |
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Fibrosing Mediastinitis
Fibrosing Mediastinitis: The least common, but most severe, late complication of histoplasmosis. Educational and research information. Includes interviews, patient stories, and a community forum. (Rare Disorders)
http://www.fibrosingmediastinitis.com |
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Kindler Syndrome
Kindler Syndrome: An article and case study of this rare disease. Includes links. (Rare Disorders)
http://digilander.libero.it/camdic/KINDLER.html |
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Lymphangiomatosis and Gorham's Vanishing Bone Disease
Lymphangiomatosis and Gorham's Vanishing Bone Disease: Provides general information and a personal account, including pictures and X-rays. Also offers patient contact and an email discussion group. (Rare Disorders)
http://www.gorhams.dk |
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Contact a Family
Contact a Family: Information about this organization as well as the CaF directory of specific conditions and rare disorders. Also details about the Rare Disorders Alliance - UK. (Rare Disorders)
http://www.cafamily.org.uk |
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National Organization for Rare Disorders, Inc.
National Organization for Rare Disorders, Inc.: Information about NORD, its programs, special events and the variety of services offered. Includes a rare disease, organization and orphan drug database. Diseases are listed alphabetically for easy searching. (Rare Disorders)
http://www.rarediseases.org/ |
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International Rare Disease Support Network
International Rare Disease Support Network: A community providing more than a 1000 different links to support groups for the people of all nations. (Rare Disorders)
http://www.raredisorders.com |