Cherubs (Popularity:  )
A non-profit support group for the families and medical care providers of children and adults born with Congenital Diaphragmatic Hernia.
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National Organization for Rare Disorders, Inc. (Popularity: )
Information about NORD, its programs, special events and the variety of services offered. Includes a rare disease, organization and orphan ...
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International Rare Disease Support Network (Popularity: )
A community providing more than a 1000 different links to support groups for the people of all nations.
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Human Growth Foundation (Popularity: )
Information about growth-related disorders through education, research, and advocacy. Member driven organization.
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Contact a Family (Popularity: )
Information about this organization as well as the CaF directory of specific conditions and rare disorders. Also details about the ...
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Nomid /Cinca (Popularity: )
Resource for parents and patients suffering from Neonatal Onset Multi-inflammatory Disease Chronic, or Infantile, Neurologic, Cutaneous and Articular syndrome. Site ...
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Tetrahydrobiopterin (Popularity: )
Information on structure, biosynthesis and pathophysiology of BH4 and tetrahydrobiopterin deficiency.
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Fibrous Dysplasia Support Online (Popularity: )
For those seeking support and information concerning the rare bone diseases: fibrous dysplasia, McCune Albright Syndrome and Cherubism.
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Kindler Syndrome (Popularity: )
An article and case study of this rare disease. Includes links.
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Lymphangiomatosis and Gorham's Vanishing Bone Disease (Popularity: )
Provides general information and a personal account, including pictures and X-rays. Also offers patient contact and an email discussion group.
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Fibrosing Mediastinitis (Popularity: )
The least common, but most severe, late complication of histoplasmosis. Educational and research information. Includes interviews, patient stories, and a ...
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Information Centre for Rare Diseases and Orphan Drugs (Popularity: )
Offers an Internet portal. Includes news, forums, rare disease and orphan drug info and registration forms
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