Miss Pressley: Kudos to CDO!

Saturday, November 29, 2008

Kudos to CDO!

I want to give a "shout out" to Sarah, Linda and others at Chromosome for putting together a video to bring issue of children with rare chromosomal disorders to the forefront! Click on the link to go to the website to view the video.

My daughter was born with a 2q- abnormality. It was incredibly difficult to navigate the "system" with a child whose disorder was so rare the doctors were stumped. Thank goodness for CDO and all the work they do. I didn't become aware of the group until well after my daughter passed away. The group is a great resource.

The organization is a 501(C)3 non-profit group and accepts donations. They provide great support and advocacy for parents and children with these rare disorders.

Chromosome Disorder Outreach, Inc. (CDO)
P.O. Box 724
Boca Raton, FL 33429-0724

Chromosome Disorder Outreach, Inc. is a non-profit organization, founded, supported, and run by parents just like you. 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.

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