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. |
Caleb's Courage
A baby's fight with MPS I, Hurler Syndrome. Information on the disease and links to other children fighting disease. |
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. |
MCAD Angel
Dedicated to raising awareness of the genetic disorder known as MCAD deficiency and the importance of early detection. |
Mowat-Wilson
Discussion site for mowat-wilson syndrome. Includes a links page, photos, a community page and a discussion area. |
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. |
Unlucky Mutant
The author request help from geneticists, neuroscientists, pharmaceuticals or biotech companies. |
XXXXY Syndrome
Information on this rare chromosomal abnormality. |
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