Personal Pages
Personal Pages Links
- 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.
- Daniels Neurofibromatosis page A child living with neurofibromatosis and optic glioma with links.
- Maddy's Page The story of Madison Wigglesworth who has hurler syndrome. Includes photo album and links to informative sites.
- Justin's Journey A personal story of a young man who was born Hurlers Syndrome. First in the world for Enzyme Replacement Therapy.
- Zara Fox Read and learn about a little girl that has Coffin-Sirris Syndrome.
- Taryn's World: About Switches Personal page for kids and parents about genetic disorders, especially mannosidosis.
- Treacher Collins Syndrome - A Personal View UK based website, containing information about the disorder, with helpful links and discussion forum.
- Strickler Family Homepage A family page offering information about children born with Baller-Gerold syndrome and Omenn syndrome, a form of combined immune deficiency.
- Alpha1 Antitrypsine Deficiency One man's perspective and journey with A1AD and a list of links and other resources from the internet.
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