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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. |