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Alpha1 Antitrypsine Deficiency
One man's perspective and journey with A1AD and a list of links and other resources from the internet.
http://home.att.net/~a1ad/intro.htm
Ashly's Skeletal Dysplasia
A mom describes her daughters disorder which is thought to be a metabolic disease similar to mucopolysachharisdoses. Also links to other related sites.
http://www.angelfire.com/or2/ashlysworldofwonders/about.html
Treacher Collins Syndrome - A Personal View
UK based website, containing information about the disorder, with helpful links and discussion forum.
http://www.treachercollins.co.uk
Maddy's Page
The story of Madison Wigglesworth who has hurler syndrome. Includes photo album and links to informative sites.
http://members.aol.com/kymwig
Taryn's World: About Switches
Personal page for kids and parents about genetic disorders, especially mannosidosis.
http://www.tarynsworld.org/taryn/switches.htm
GotGod?com
A family and memorial website dedicated to their son, Nathan Philip Batman, who passed away as a result of Trisomy 13, or Patau's Syndrome.
http://gotgod.com
Robert Kenneth Picklesimer
Born with Jeune Syndrome or Asphyxiating Thoracic Dystrophy in Louisville Kentucky. He underwent corrective surgery in San Antonio Texas, called the Titanium Rib Project.
http://www.picklesimers.com/robert_kenneth.html
Joy's Page
Personal account about a daughter having Opitc Nerve Hypoplasia, Septo-Optic Dysplasia and had either a Congenital stroke or has schizencephaly.
http://www.lebaronfamily.com
XXXXY Syndrome
Information on this rare chromosomal abnormality.
http://www.xxxxysyndrome.com
Story of Robert Purkis
A small boy's health problems, possibly Leigh's Syndrome, and how his parents have helped him improve his quality of life.
http://swpurkis.pwp.blueyonder.co.uk/index.html
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