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About Primary Hyperoxaluria Online information for consumers about primary hyperoxaluria, a rare metabolic disease caused by the liver making too much oxalic acid which is excreted in the urine.... Details > Oxalosis and Hyperoxaluria Foundation | Genetic and Rare Conditions: Support Groups & Information Page Professionals, educators, or individuals seeking information on genetic conditions or birth defects can use this directory to locate national and international organizations, or contact a genetic coun... Details > Educational Institution--Follow the Resource URL for More Information | Information about Rare Diseases Includes links to definitions, causes, treatments and publications; links to Institutes and Centers at the National Institutes of Health (NIH); links to glossary for defining technical language and an... Details > Office of Rare Diseases, National Institutes of Health | Joubert Syndrome Information Center Online information center provides resources, articles and reports related to joubert syndrome. Feeding & oral motor, hearing, legal help, medical journal articles and therapy are addressed.... Details > Joubert Syndrome Foundation, Inc | Joubert Syndrome Resources Links to federal agencies, support groups and other nonprofit websites that provide information and resources for joubert syndrome.... Details > Joubert Syndrome Foundation, Inc | Klippel Trenaunay Syndrome Patient Education The information on this web page is designed to assist parents of newly-diagnosed patients with Klippel-Trenaunay (K-P) syndrome, a rare congenital malformation that may include a port-wine stain or "... Details > National Organization for Rare Disorders, Inc. | Laurence Moon Bardet Biedl Syndrome Information and Referral Services Links to support services, organizations, genetic societies, treatment clinics and other resources related to Laurence Moon Bardet Biedl Syndrome.... Details > Educational Institution--Follow the Resource URL for More Information | Rare Diseases Clinical Research Database The Rare Diseases Clinical Research Database was developed by the Office of Rare Diseases at the National Institutes of Health. This database provides you information about ongoing or planned research... Details > Office of Rare Diseases, National Institutes of Health |
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