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Home > Diseases and Conditions > Rare Disorders Rare Disorders Aicardi Syndrome Moyamoya Alstr?m Syndrome Pemphigus Barth Syndrome Phenylketonuria Cystinosis Pierre Robin Syndrome Degos Progeria Erythromelalgia Rubinstein-Taybi Syndrome Melorheostosis Wegeners Granulomatosis 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 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 Human Growth Foundation Information about growth-related disorders through education, research, and advocacy. Member driven organization. http://www.hgfound.org/ Lymphangiomatosis and Gorham's Vanishing Bone Disease Provides general information and a personal account, including pictures and X-rays. http://www.gorhams.dk National Organization for Rare Disorders, Inc. Information about NORD, its programs, special events and the variety of services offered. http://www.rarediseases.org/ Tetrahydrobiopterin Information on structure, biosynthesis and pathophysiology of BH4 and tetrahydrobiopterin deficiency. http://www.bh4.org XLH Network Patient support group for XLH, a genetic condition also known as X-Linked Hypophosphatemia, X-Linked Hypophosphatemic Rickets, Familial Hypophosphatemia, Vitamin D-Resistant Rickets. http://www.xlhnetwork.org/

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