Mission: CDO provides detailed information and emotional support to all those diagnosed with any rare chromosome disorder. CDO promotes 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. Individuals and families contacting CDO are reassured that they are alone and help is available to them.
Target demographics: all those diagnosed with any rare chromosome disorder
Direct beneficiaries per year: over 1000 individuals and families
Geographic areas served: the United States and worldwide
Programs: personalized networking programs - matches by chromosome disorder, medical and developmental symptoms and regional location available. Database registry maintained and updated daily. Library containing thousands of recent articles as well as original chromosome chapters. Periodic newsletter. Interactive website
I am the parent of a young child with a rare disorder and CDO has helped me "meet" other parents of children with this disorder to compare symptoms, discuss possible treatments and therapies, and--most importantly--provide a sympathetic and kindhearted listening ear when times get tough. This is an excellent organization and I highly recommend it to anyone dealing with a rare genetic disease.
I have been a member of CDO for 7 years. This organization offers so much when there is so little information out there. After our son's diagnosis we were left with little to no information about his rare duplication 18q12.3. CDO helped to make us realize we were not the only ones out there. This organization is a blessing!
My daughter has a chromosome disorder that only 3 others in the entire world have ever been known to have. This group helped me realize that we are not so rare in our struggles, and that people truly do care and help each other. I am grateful for their knowledge and eagerness to help.
CDO is such a caring organization. After my daughter was diagnosed with a 6q terminal deletion, I felt so alone. CDO helped me connect with other families around the country who had a child with similar deletions. Suddenly, it didn't feel so lonely, and, for the first time since my daughter was born, I felt hope.
CDO has become a huge part of my life! I have two boys that were both born with a chromosome disorder. I never thought I would find other parents going through the same struggles as I have and to be able to share and relate with each other has been an amazing journey. My oldest son passed away Oct.22, 2013. He was 14 yrs. old. He was a true testament in living a life with a huge smile (reguardless of the disabilities) despite the pain he lived with everyday. He was and will always be my hero! He is listed on the CDO Angels page. Thanks CDO for helping and getting the word out for parents like me to be able to share our stories and in making new friendships and leting us know and feel that we are not alone.
CDO has helps families feel like they are not alone when faced with an extremely rare diagnoses. They have a few communities such as message boards and Facebook groups. They also have a listserve that can connect people to others who may have a child with a similar disorder.