Personal Pages
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Web Pages
Alpha1 Antitrypsine Deficiency
One man's perspective and journey with A1AD and a list of links and other resources from the internet.
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.
Treacher Collins Syndrome - A Personal View
UK based website, containing information about the disorder, with helpful links and discussion forum.
Daniels Neurofibromatosis page
A child living with neurofibromatosis and optic glioma with links.
Maddy's Page
The story of Madison Wigglesworth who has hurler syndrome. Includes photo album and links to informative sites.
Taryn's World: About Switches
Personal page for kids and parents about genetic disorders, especially mannosidosis.
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.
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.
Joy's Page
Personal account about a daughter having Opitc Nerve Hypoplasia, Septo-Optic Dysplasia and had either a Congenital stroke or has schizencephaly.
XXXXY Syndrome
Information on this rare chromosomal abnormality.
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.