Web Directory

» 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.
   http://www.angelfire.com/or2/ashlysworldofwonders/about.html

» Caleb's Courage
   Several videos about a baby's fight with MPSI-Hurler Syndrome.
   http://www.youtube.com/watch?v=BFfYPSlKOTY

» Daniel Raymond Wickman
   Provides information about the chromosomal disorder, Trisomy 18. Includes a blog about the pregnancy, birth, and life of the author's son Daniel and links for support and education.
   http://www.danielraymondwickman.weebly.com

» In Balance with Arm Prosthesis
   Personal story of a woman with a congenital reduction defect of her right forearm and how she achieved her present balanced state.
   http://sites.google.com/site/armprosthesis/

» Joy's Page
   Personal account about a daughter having Opitc Nerve Hypoplasia, Septo-Optic Dysplasia and had either a Congenital stroke or has schizencephaly.
   http://www.lebaronfamily.com

» MCAD Angel
   Dedicated to raising awareness of the genetic disorder known as MCAD deficiency and the importance of early detection.
   http://www.mcadangel.com

» Mowat-Wilson
   Discussion site for mowat-wilson syndrome. Includes a links page, photos, a community page and a discussion area.
   http://www.mowatwilson.org

» 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.
   http://www.picklesimers.com/robert_kenneth.html

» Stephanie Jude Kuleba
   Site set up in memory of Stephanie to promote awareness of malignant hyperthermia, a rare genetic disorder.
   http://stephaniejudekuleba.org

» 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.
   http://swpurkis.pwp.blueyonder.co.uk/index.html

» Trisomy 18 Angel
   In memory of Abigail Renee, to help other families who have been given a diagnosis of Trisomy 18.
   http://www.trisomy18angel.com

» XXXXY Syndrome
   Information on this rare chromosomal abnormality.
   http://www.xxxxysyndrome.com