Alpha1 Antitrypsine Deficiency - http://home.att.net/~a1ad/intro.htm
One man's perspective and journey with A1AD and a list of links and other resources from the internet. |
Ashly's Skeletal Dysplasia - http://www.angelfire.com/or2/ashlysworldofwonders/about.html
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 - http://www.lebaronfamily.com
Personal account about a daughter having Opitc Nerve Hypoplasia, Septo-Optic Dysplasia and had either a Congenital stroke or has schizencephaly. |
MCAD Angel - http://www.mcadangel.com
Dedicated to raising awareness of the genetic disorder known as MCAD deficiency and the importance of early detection. |
Mowat-Wilson - http://www.mowatwilson.org
Discussion site for mowat-wilson syndrome. Includes a links page, photos, a community page and a discussion area. |
Robert Kenneth Picklesimer - http://www.picklesimers.com/robert_kenneth.html
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 - http://swpurkis.pwp.blueyonder.co.uk/index.html
A small boy's health problems, possibly Leigh's Syndrome, and how his parents have helped him improve his quality of life. |
XXXXY Syndrome - http://www.xxxxysyndrome.com
Information on this rare chromosomal abnormality. |