About CDO

History

Chromosome Disorder Outreach Inc. is a non-profit organization which was founded in 1992 by a group of seven parents raising children born with rare chromosome disorders. The Genetic Alliance helped CDO get its start that year, and CDO was approved as a member of the National Organization of Rare Disorders (NORD) in 1998.

Our mission is to provide support and information to anyone diagnosed with a rare chromosome change, rearrangement or disorder. Additionally CDO actively promotes research and a positive community understanding of all chromosome 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.

To further the dissemination of the most accurate and appropriate information, CDO offers an extensive library of available up-to-date articles to members and also maintains a detailed database registry.  We publish periodic newsletters, provide access to research opportunities and interaction with our medical advisory board. And most importantly we offer our members connections with others who are coping with the same or similar chromosomal diagnosis through our personalized networking programs.

Our Twitter, Facebook, YouTube and other social media sites offer individuals and families coping with a rare disorder diagnosis a chance to reach out 24 hours a day.  CDO is able to provide support and information to families around the world.

Our Impact

The impact CDO has on families is immeasurable. Please see our Annual Report to learn more about CDO’s impact, as well as read about future plans and to see its financial report.

Our Partnerships

Meet The Team

Linda Sorg
President

Mom of Elizabeth, unbalanced translocation 5p;7q, has been President of CDO since 1996.

Darlene Axelsson
Co-President

Mom of Lukas, 7q deletion, currently handles CDOs networking responsibilities. She has been a member since 1997, is Co-President, and a Director since 2007.

Adreanna Tarwater
Director

Mom of Nathan, 7;18 unbalanced translocation, has been a CDO director since April 2005. Adreanna is the current Treasurer and assists with membership correspondence.

Julie Hofer
Librarian

Mom of Andrew, 9q31.2-q32 deletion, has been the CDO Librarian since May 2002.

Heidi Lerner
Director

Mom of Max, 6q deletion 16.1-21, has been a director since 2009.

Kelly Paulson
Director

Mom of Gus, 3p25.3-26.3 deletion, has been a board member since 2013

You are donating to : Chromosome Disorder Outreach, Inc, a 501c non-profit organization.

CDO is a 501C3 non-profit organization. FL Reg #SC11200 100% of donations are used to support those affected by chromosome disorders. CDO does not employ professional fundraisers.

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