Sites:
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.
Joy's Page: Personal account about a daughter having Opitc Nerve Hypoplasia, Septo-Optic Dysplasia and had either a Congenital stroke or has schizencephaly.
Maddy's Page: The story of Madison Wigglesworth who has hurler syndrome. Includes photo album and links to informative sites.
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.
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.
Taryn's World: About Switches: Personal page for kids and parents about genetic disorders, especially mannosidosis.
Treacher Collins Syndrome - A Personal View: UK based website, containing information about the disorder, with helpful links and discussion forum.
XXXXY Syndrome: Information on this rare chromosomal abnormality.
