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        Resource List


This resource list is an ongoing project
If you have web links that should be included please let me know. 
Introductions for each website is taken directly from the site to give you a good idea of its content.

Genetic disorders and syndromes
Mulpitle Births and Low Birth Weight Infants

Genetic Disorders and Syndromes

GeneTests·GeneClinics Web site 

A publicly funded medical genetics information resource 
developed for physicians, other healthcare providers, and 
researchers, available at no cost to all interested persons.
This website requires a one time registration.  
Once you have signed in you make access a lot of information. 
The 'Index of Review Titles' found by using the 
'Titles' Button in the Search Options is very useful.

Genetic and Rare Conditions Site
An incredible resource with a multitude of additional links

Spinal Muscular Atrophy
Serves as a source of information and support to those involved with children and adults with Spinal Muscular Atrophy (SMA).

Chromosome 15

WELCOME TO THE WEBSITE OF IDEAS, a support group for families and professionals interested in the chromosomal condition known as isodicentric 15 (formerly inverted duplication 15). Through our informative newsletters, parent networking and research contacts, our group is growing every day. If you're searching for information about isodicentric 15, you've come to the right place!

Characterized by abnormal bone growth that results in short stature with disproportionately short arms and legs, 
a large head, and characteristic facial features.

The result of the disproportionate growth of the skeleton. In most cases, dwarfism is genetically determined. We refer to those affected as "Little People."

Little People of America, Inc.
A nonprofit organization that provides support and information to people of short stature and their families.

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WELCOME to the CAPPS Website!

Craniosynostosis And Positional Plagiocephaly Support, Inc

Positional Plagiocephaly Parents' Support  

There are many different ways that Positional Plagiocephaly can be caused....

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Who are we?
We're parents helping parents get the information that they need to be sure that their child is getting the treatment that they deserve!  We aren't medical professionals, just parents and caregivers - LIKE YOU!

Mission Statement
To ensure that parents get all the information available to them regarding torticollis and its appropriate treatment. We also want to provide support and an open forum for parents to discuss their situation and their needs.

What is Torticollis?

Torticollis literally means "twisted neck".  It is derived from the Latin terms torta meaning twisted and collum meaning neck.  The term "torticollis" actually refers to the positioning of the head.  There are many underlying conditions that can cause a head and neck position that would be considered torticollis.

The version of torticollis most commonly found in infants is Congenital Muscular Torticollis, meaning:

Congenital - present at birth
Muscular - affecting the muscles
Torticollis - literally means 'twisted neck'

For more information go to


Alternate Names : Spasmodic Torticollis, Congenital Torticollis, Wry Neck

Overview, Causes, & Risk Factors information available at or click on link. 

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Multiple Births and 
Low Birth Weight Infants
Multiple Births Canada
Canada's National Organization for multiples and their families and anyone with an interest in multiples.
Lynda P. Haddon, Multiple Birth Educator
Multiple Birth: Prenatal Education & Bereavement Support 
A comprehensive Site for parents expecting multiples, healthcare professionals and researchers. Also provides bereavement support for families losing one, more or all of their babies and for surviving co-multiples.
Ottawa Coalition for the Prevention of Low Birth Weight
Multilingual Site with downloadable information on the prevention of low birth weight for expecting families and those thinking of becoming pregnant. Funded through Success by 6.

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