About CDO

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 or gene mutation disorder. Additionally CDO actively promotes research and a positive community understanding of all chromosome disorders.

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 or gene mutation disorder 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.

CDO is a member of the National Organization for Rare Disorders and is affiliated with the Genetic Alliance.


National Organization for Rare Disorders

Our Partnerships

Board of Directors

Mary Jane Gutkowski
Founding Member, Director
Linda Sorg

Director, Officer and Administrator

Darlene Axelsson

Director, Officer, Administrator and Networking Program Manager

Adreanna Tarwater
Officer and Director


Heidi Lerner

Social Media Content

Kelly Paulson

Graphic Design

Kathy Wiens

Advisory Board

Dr. Iosif Lurie, MD, PhD
Scientific Advisory Board Member

Dr. Iosif Lurie is a medical geneticist and has worked at the University of Maryland and later at Johns Hopkins University writing for the OMIM system. He is the author of more than 200 publications including ~120 articles on different aspects of structural autosomal anomalies. He maintains a private, constantly updated database regarding these anomalies and uses it for his work for CDO.

Milen Velinov, MD, PhD
Scientific Advisory Board Member

Dr. Milen Velinov is a clinical geneticist and a Clinical Associate Professor at Rutgers Robert Wood Johnson School of Medicine. He is also the Medical Director of the Division of Genetics at the Rutgers Child Health Institute of New Jersey.
Dr. Velinov has over 100 published articles, abtracts and chapters on various genetic disorders. For his research in Genetics, he received the 1994 Annual Fellow’s Clinical Research Award of the American Society of Pediatric Research and the 1997 American Academy of Pediatrics Resident research award.

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