About CDO


Chromosome Disorder Outreach Inc. is a non-profit 501C3 charitable 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, an Ask the Doctor program and 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, Pinterest 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

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

Darlene Axelsson

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

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

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

Heidi Lerner

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

Kelly Paulson

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

Dr. Iosif Lurie, M.D., Ph.D.
Medical Geneticist

Dr. Lurie graduated from the Medical School in Leningrad (in the former USSR) in 1968. His first publications regarding chromosomal disorders appeared in 1970-1971. From 1972 through 1992, he worked in Minsk, also in the former USSR, as a clinical geneticist, researcher and chief of the Department of Birth Defects Genetics. The topic of his first thesis was “Medico-genetic counseling in chromosomal disorders” (1975). The topic of his doctoral thesis was “Genetics of multiple birth defects” (1985). Since 1992 he has lived in the Baltimore MD area and worked at the University of Maryland and later at Johns Hopkins University writing for the OMIM system.

Since 2011, Dr. Lurie has worked as a consultant for Chromosome Disorder Outreach (CDO). He is the author of more than 200 publications including ~120 articles on different aspects of structural autosomal anomalies. So he can say that researching and writing about chromosomal disorders is his life-long passion. He maintains a private, constantly updated database regarding these anomalies and uses it for his work for CDO.

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