Naorp :: Health :: Conditions_and_Diseases :: Rare_Disorders (22)

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Sites:

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.
Cherubs: A non-profit support group for the families and medical care providers of children and adults born with Congenital Diaphragmatic Hernia.
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.
Fibrosing Mediastinitis: The least common, but most severe, late complication of histoplasmosis. Educational and research information. Includes interviews, patient stories, and a community forum.
Fibrous Dysplasia Support Online: For those seeking support and information concerning the rare bone diseases: fibrous dysplasia, McCune Albright Syndrome and Cherubism.
Human Growth Foundation: Information about growth-related disorders through education, research, and advocacy. Member driven organization.
International Rare Disease Support Network: A community providing more than a 1000 different links to support groups for the people of all nations.
Kindler Syndrome: An article and case study of this rare disease. Includes links.
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.
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 support group at eGroups.
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.
Tetrahydrobiopterin: Information on structure, biosynthesis and pathophysiology of BH4 and tetrahydrobiopterin deficiency.