Genetic Disorders

Resources in this category:

The A-T Children's Project
http://www.atcp.org

The A-T Children's Project Home Page was "created to provide physicians, research scientists, families and support providers with information about an inherited childhood disease called Ataxia-Telangiectasia." You can find answers to questions such as what A-T is, how it is inherited, and how to diagnose patients. Information about A-T's relevance to common diseases and recent A-T research can also be found. Additionally, sections specifically for research scientists and physicians are provided. You can also read information about the A-T Children's Project itself.

Ask NOAH About: Sickle Cell Disease
http://www.noah-health.org/en/blood/sicklecell/

A series of links categorized into basic descriptions, causes, screening, treatment, organizations, research groups, and information for special groups.

Ask NOAH About: Muscular Dystrophy
http://www.noah-health.org/en/bjm/md/

A comprehensive grouping of links regarding muscular dystrophy. Includes general information, diagnosis, specific types of the disorder, treatment, research, and organizations.

Cystic Fibrosis Resource Center
http://www.healingwell.com/cysticfibrosis/

Contains a "comprehensive guide to causes, symptoms, approaches to treatment, and ongoing research into this disease." It also has a directory of links to organizations, support groups, chat rooms, and current research.

Down Syndrome: Health Issues
http://www.ds-health.com/

Support and informational site written by a pediatrician and father of a Down Syndrome child. Contains health articles, informational lists compiled by the author, health guidelines, current controversies, and links to additional sites.

Family Village - A Global Community of Disability-Related Resources
http://www.familyvillage.wisc.edu/

Family Village offers many links on disability related subjects. Physical, mental, and learning disabilities are covered. Enter the library to find links about disabilities. Enter the school to find information on accessibility.

Genetic Alliance
http://www.geneticalliance.org/

"The Genetic Alliance promotes healthy lives by working to speed the translation of genetic advances into quality and affordable health care, public awareness and consumer-centered public policies."

Hutchinson-Gilford Progeria Syndrome Network
http://www.hgps.net/

This site contains a daily news feed of articles about Progeria. It also has an extensive list of links to authoritative resources for families of someone with Progeria.

International Child Development Resource Center
http://www.icdrc.org/

This site provides information about upcoming conferences and online trainings that relate to autism and has links to more resources. The ICDRC was co-founded by two doctors who specialize in the treatment of children with developmental disorders.

The National Down Syndrome Society Web Site
http://www.ndss.org/

"The Internet's most comprehensive information source on Down's Syndrome." Headings include research, communities, news and events, and advocacy. The information and resources section contains such topics as health, development, schooling, life planning, and additional resources. Available in Spanish and English.

National Organization for Albinism and Hypopigmentation
http://www.albinism.org/

The organization provides information and support, promotes education, encourages research, and provides networking opportunities for people associated with albinism and hypopigmentation.

Rett Syndrome Research Foundation
http://www.rsrf.org/

Describes Rett Syndrome and its symptoms, diagnosis, research, events, and recent developments.