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Cystic Fibrosis (37)
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    Health > Resources > Personal Pages  (19)
    Society > Disabled > Personal Pages  (25)

Web Pages
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  Taryn's World: About Switches http://www.tarynsworld.org/taryn/switches.htm
Personal page for kids and parents about genetic disorders, especially mannosidosis.
  Mowat-Wilson http://www.mowatwilson.org
Discussion site for mowat-wilson syndrome. Includes a links page, photos, a community page and a discussion area.
  XXXXY Syndrome http://www.xxxxysyndrome.com
Information on this rare chromosomal abnormality.
  Joy's Page http://www.lebaronfamily.com
Personal account about a daughter having Opitc Nerve Hypoplasia, Septo-Optic Dysplasia and had either a Congenital stroke or has schizencephaly.
  MCAD Angel http://www.mcadangel.com
Dedicated to raising awareness of the genetic disorder known as MCAD deficiency and the importance of early detection.
  Ashly's Skeletal Dysplasia http://www.angelfire.com/or2/ashlysworldofwonders/about.html
A mom describes her daughters disorder which is thought to be a metabolic disease similar to mucopolysachharisdoses. Also links to other related sites.
  Story of Robert Purkis http://swpurkis.pwp.blueyonder.co.uk/index.html
A small boy's health problems, possibly Leigh's Syndrome, and how his parents have helped him improve his quality of life.
  Robert Kenneth Picklesimer http://www.picklesimers.com/robert_kenneth.html
Born with Jeune Syndrome or Asphyxiating Thoracic Dystrophy in Louisville Kentucky. He underwent corrective surgery in San Antonio Texas, called the Titanium Rib Project.
  Alpha1 Antitrypsine Deficiency http://home.att.net/~a1ad/intro.htm
One man's perspective and journey with A1AD and a list of links and other resources from the internet.

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