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.
Direct link: Contact a FamilyRare Disorders
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A rare disease, also referred to as an orphan disease, is any disease that affects a small percentage of the population.
Most rare diseases are genetic, and thus are present throughout the person's entire life, even if symptoms do not immediately appear. Many rare diseases appear early in life, and about 30 percent of children with rare diseases will die before reaching their fifth birthday.[1] With a single diagnosed patient only, ribose-5-phosphate isomerase deficiency is presently considered the rarest genetic disease.
No single cutoff number has been agreed upon for which a disease is considered rare. A disease may be considered rare in one part of the world, or in a particular group of people, but still be common in another.
Extracted from www.wikipedia.org.
Contact a Family
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European Organisation for Rare Diseases
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European Organisation for Rare Diseases
– Alliance of patient associations dedicated to improving the quality of life of all people living with rare diseases in Europe.
Direct link: European Organisation for Rare DiseasesHuman Growth Foundation
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Human Growth Foundation
– Information about growth-related disorders through education, research, and advocacy. Member driven organization.
Direct link: Human Growth FoundationInformation Centre for Rare Diseases and Orphan Drugs
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Information Centre for Rare Diseases and Orphan Drugs
– Offers an Internet portal. Includes news, forums, rare disease and orphan drug information and registration forms
Direct link: Information Centre for Rare Diseases and Orphan DrugsKindler Syndrome
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Kindler Syndrome
– An article and case study of this rare disease. Includes links.
Direct link: Kindler SyndromeOffice of Rare Diseases
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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.
Direct link: Office of Rare Diseases