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Global Update

Indian Pediatrics 2005; 42:1065

Pedscapes


Fragile X Syndrome

Fragile is one of the commonest inherited causes of mental retardation. Some of the websites on this disorder are listed below:

March-of-Dimes Foundation - http://www.marchofdimes.com/professionals/681_9266.asp  

The March of Dimes foundation is a non-profit organization that aims to prevent birth defects. Their Fragile X page contains quick reference fact sheets on the various medical aspects of the syndrome. This site also contains resources for parents, posters and other educational material about the disease.

Conquer Fragile X - http://www.conquerfragilex.org/ 

The conquer fragile X website contains four main sections - ‘all about fragile X’, ‘focus on families’ where families can exchange their experiences, newsletter and ‘focus on research’ which contains information on latest research information about the disease.

The National Fragile X Foundation - http://www.fragilex.org/html/what.htm

This website provides information to parents and families about fragile X syndrome. Detailed information on clinical features, diagnosis, rehabilitation, online questions and answers and a message board are some of the features of this site.

NICHD booklet - ‘Families and Fragile X foundation'’-
http://www.nichd.nih.gov/publications/pubs/fragileX/index.htm

This is a comprehensive online booklet on all aspects of living with fragile X syndrome, by the National Institute of Child Health and Human Development (NICHD), USA. The website also contains information about the latest research and a large collection of links on fragile X syndrome.

C. Vidyashankar,
PO Box 3168,
Post Code 112,
Muscat,
 Oman,
E-mail: [email protected]

  

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