Top : Genetic Disorders : Personal Pages

Genetic Disorders - Personal Pages - site listings

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.

Treacher Collins Syndrome - A Personal View - UK based website, containing information about the disorder, with helpful links and discussion forum.

Unlucky Mutant - The author request help from geneticists, neuroscientists, pharmaceuticals or biotech companies.

Alpha1 Antitrypsine Deficiency - One man's perspective and journey with A1AD and a list of links and other resources from the internet.

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.

XXXXY Syndrome - Information on this rare chromosomal abnormality.

Joy's Page - Personal account about a daughter having Opitc Nerve Hypoplasia, Septo-Optic Dysplasia and had either a Congenital stroke or has schizencephaly.

Mowat-Wilson - Discussion site for mowat-wilson syndrome. Includes a links page, photos, a community page and a discussion area.

Maddy's Page - The story of Madison Wigglesworth who has hurler syndrome. Includes photo album and links to informative sites.

MCAD Angel - Dedicated to raising awareness of the genetic disorder known as MCAD deficiency and the importance of early detection.

Caleb's Courage - A baby's fight with MPS I, Hurler Syndrome. Information on the disease and links to other children fighting disease.

Taryn's World: About Switches - Personal page for kids and parents about genetic disorders, especially mannosidosis.

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.