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Chromosome Disorder Outreach, Inc.(CDO) / National Office

Last Update:3/13/2018
Contact:Linda Sorg
Title:President
Address:P.O. Box 724
Boca Raton, FL 33429
County:Out of state
Phone:(561) 395-4252
Toll Free:
Fax:(561) 395-4252
TDY:
E-Mail:
Website:www.chromodisorder.org
Mission

To provide support to parents of children born with rare chromosome disorders, gather together and share information, and to promote research and a positive community understanding of these disorders.

CDO envisions a time in the not too distant future when doctors will have a great deal of information available on each and every chromosome disorder. They will be able to tell parents symptoms associated with a particular deletion, duplication or other disorder as well as what not to worry about.

It is also our hope that appropriate therapies or other treatments will be recommended specific to particular disorders and that affected individuals will have a much greater chance of a fuller life. This is already beginning to happen and it is CDO’s goal to further support this research in any way possible.

Program Description

Chromosome Disorder Outreach, Inc. is a non-profit organization, founded, supported, and run by parents. Our children are affected by a wide range of chromosome disorders, including deletions, duplications, trisomies, inversions, translocations, and rings. Sometimes these disorders are so unusual that doctors tell us, “You’re the only one out there.” But now using our newly introduced web application we have the capability to specifically categorize chromosomal karyotypes and finally begin to understand more about the genes involved in each rare chromosome rearrangement.

We hope to eventually improve specifically tailored treatments to help affected individuals. Please read our website's Introduction to Chromosomes for more about these rare disorders. We’ve been helping each other for over fifteen years. Our families live around the world and CDO provides a network of support and information through an extensive library of available up-to-date articles, detailed registry, newsletters, and a listserv that’s online 24 hours a day, everyday.

CDO also has a medical advisory board composed of geneticists, genetic counselors, researchers and grief counselors. Chromosome Disorder Outreach, Inc. is a current member of the Genetic Alliance and the National Organization of Rare Disorders.

Financial

Membership is free.

Services
Family Support
On-line Community/Listserv/Social Media
Parent to Parent/Matching
Rare Disorders
Counties Serviced
Nationwide
ABOUT SPECIAL KIDS RESOURCE DIRECTORY
7172 Graham Road, Suite 100, Indianapolis, IN 46250 E-Mail: familynetw@aboutspecialkids.org

As a matter of policy, About Special Kids does not specifically endorse any of the resources contained on our website or in our information packets. Resources are supplied for information purposes only and ASK recommends that families explore all options for assistance before making an informed choice.