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Genetic Disorders
:Personal Pages
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Cystic Fibrosis
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Society: Disabled: Personal Pages
(29)
Alpha1 Antitrypsine Deficiency
- One man's perspective and journey with A1AD and a list of links and other resources from the internet.
Amelka's Page
- Amelka was born in Warsaw, Poland with a complex of congenital anomalies. Photos, history and contact. [English/Polish]
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.
XXXXY Syndrome
- Information on this rare chromosomal abnormality.
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