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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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Information about this organization as well as the CaF directory of specific conditions and rare disorders. Also details about the Rare Disorders Alliance - UK.
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Alliance of patient associations dedicated to improving the quality of life of all people living with rare diseases in Europe.
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For those seeking support and information concerning the rare bone diseases: fibrous dysplasia, McCune Albright Syndrome and Cherubism.
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Information about growth-related disorders through education, research, and advocacy. Member driven organization.
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Offers an Internet portal. Includes news, forums, rare disease and orphan drug information and registration forms
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An article and case study of this rare disease. Includes links.
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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.
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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 support group at eGroups.
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Information on more than 6000 rare diseases, including current research, publications from scientific and medical journals, completed research, ongoing studies, and patient support groups.
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Information on structure, biosynthesis and pathophysiology of BH4 and tetrahydrobiopterin deficiency.
