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Pemphigoid Progeria Degos VATER Syndrome Wegener's Granulomatosis Agnosia Cystinosis Aicardi Syndrome Cleidocranial Dysplasia Cerebrocostomandibular Syndrome Melorheostosis Moyamoya Pierre Robin Syndrome Pemphigus Phenylketonuria Rubinstein-Taybi Syndrome Barth Syndrome Jacobsen Syndrome Ollier Disease Tyrosinemia Erythromelalgia Alström Syndrome

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Health: Conditions and Diseases: Genetic Disorders

Sites:

Cherubs  - http://www.cherubs-cdh.org  A non-profit support group for the families and medical care providers of children and adults born with Congenital Diaphragmatic Hernia.  National Organization for Rare Disorders, Inc.  - http://www.rarediseases.org/  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.  Human Growth Foundation  - http://www.hgfound.org/  Information about growth-related disorders through education, research, and advocacy. Member driven organization.  Contact a Family  - http://www.cafamily.org.uk  Information about this organization as well as the CaF directory of specific conditions and rare disorders. Also details about the Rare Disorders Alliance - UK.  Nomid /Cinca  - http://pweb.netcom.com/~jkbarton/nomid/Html/nomid_home_page.htm  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.  Tetrahydrobiopterin  - http://www.bh4.org  Information on structure, biosynthesis and pathophysiology of BH4 and tetrahydrobiopterin deficiency.  Fibrous Dysplasia Support Online  - http://members.cox.net/fdsupport/index.html  For those seeking support and information concerning the rare bone diseases: fibrous dysplasia, McCune Albright Syndrome and Cherubism.  Kindler Syndrome  - http://digilander.libero.it/camdic/KINDLER.html  An article and case study of this rare disease. Includes links.  Lymphangiomatosis and Gorham's Vanishing Bone Disease  - http://www.gorhams.dk  Provides general information and a personal account, including pictures and X-rays. Also offers patient contact and an email discussion group.  Fibrosing Mediastinitis  - http://www.fibrosingmediastinitis.com  The least common, but most severe, late complication of histoplasmosis. Educational and research information. Includes interviews, patient stories, and a community forum.  Information Centre for Rare Diseases and Orphan Drugs  - http://www.raredis.org  Offers an Internet portal. Includes news, forums, rare disease and orphan drug info and registration forms  Office of Rare Diseases  - http://rarediseases.info.nih.gov/  Information on more than 6000 rare diseases, including current research, publications from scientific and medical journals, completed research, ongoing studies, and patient support groups.