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Top/Health/Conditions and Diseases/Genetic Disorders/Personal Pages |
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Personal Pages : |
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13 web sites matced for Personal Pages |
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Alpha1 Antitrypsine Deficiency
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One man's perspective and journey with A1AD and a list of links and other resources from the internet.
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Ashly's Skeletal Dysplasia
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A mom describes her daughters disorder which is thought to be a metabolic disease similar to mucopolysachharisdoses. Also links to other related sites.
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Maddy's Page
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The story of Madison Wigglesworth who has hurler syndrome. Includes photo album and links to informative sites.
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Taryn's World: About Switches
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Personal page for kids and parents about genetic disorders, especially mannosidosis.
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Robert Kenneth Picklesimer
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Born with Jeune Syndrome or Asphyxiating Thoracic Dystrophy in Louisville Kentucky. He underwent corrective surgery in San Antonio Texas, called the Titanium Rib Project.
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Joy's Page
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Personal account about a daughter having Opitc Nerve Hypoplasia, Septo-Optic Dysplasia and had either a Congenital stroke or has schizencephaly.
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Story of Robert Purkis
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A small boy's health problems, possibly Leigh's Syndrome, and how his parents have helped him improve his quality of life.
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MCAD Angel
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Dedicated to raising awareness of the genetic disorder known as MCAD deficiency and the importance of early detection.
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Mowat-Wilson
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Discussion site for mowat-wilson syndrome. Includes a links page, photos, a community page and a discussion area.
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Unlucky Mutant
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The author request help from geneticists, neuroscientists, pharmaceuticals or biotech companies.
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Caleb's Courage
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A baby's fight with MPS I, Hurler Syndrome. Information on the disease and links to other children fighting disease.
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XXXXY Syndrome
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Information on this rare chromosomal abnormality.
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Taryn's World: About Switches
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A kids guide to genetic disorders with stories, art gallery, and picture book to learn about what happens when switches in the body just don't work.
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