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 Agnosia (7) Aicardi Syndrome (7) Alström Syndrome (3) Barth Syndrome (3) Cerebrocostomandibular Syndrome (2) Cleidocranial Dysplasia (3) Cystinosis (7) Degos (4) Erythromelalgia (3) Melorheostosis (1) Moyamoya (7) |
Ollier Disease (1) Pemphigoid (1) Pemphigus (5) Phenylketonuria (8) Pierre Robin Syndrome (4) Progeria (10) Rubinstein-Taybi Syndrome (6) Triploidy (2) Tyrosinemia (1) VACTERL Association (17) Wegener's Granulomatosis (9) |
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Cherubs A non-profit support group for the families and medical care providers of children and adults born with Congenital Diaphragmatic Hernia. http://www.cherubs-cdh.org - Report |
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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. http://www.cafamily.org.uk - Report |
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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. http://www.eurordis.org - Report |
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Fibrous Dysplasia Support Online For those seeking support and information concerning the rare bone diseases: fibrous dysplasia, McCune Albright Syndrome and Cherubism. http://members.cox.net/fdsupport/index.html - Report |
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Human Growth Foundation Information about growth-related disorders through education, research, and advocacy. Member driven organization. http://www.hgfound.org/ - Report |
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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 http://www.raredis.org/modules/news/ - Report |
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Kindler Syndrome An article and case study of this rare disease. Includes links. http://digilander.libero.it/camdic/KINDLER.html - Report |
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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. http://www.rarediseases.org/ - Report |
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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. http://rarediseases.info.nih.gov/ - Report |
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