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Nonprofit Overview

Causes: Birth Defects & Genetic Diseases, Health

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

Community Stories

66 Stories from Volunteers, Donors & Supporters

1

Donor

Rating: 5

An excellent organization that provides information and support to families and care givers of children with a variety of chromosome issues.

Lisa386

Volunteer

Rating: 5

Great information source for the chromosome deletion community!

Previous Stories

Client Served

Rating: 5

When my daughter was diagnosed with 3p syndrome, we didn't know what the future held. CDO has been beneficial with fact sharing & most important of all experience sharing. Our family knows that we can always contact CDO if we have any questions about the help that our child needs. Thank you CDO.

Client Served

Rating: 5

Parents of a child with a rare chromosome disorder, and the kids themselves: You're not alone. And there's lots of information and knowledge that didn't used to exist, and that's continuing to mushroom. That's CDO's message and mission. CDO uses the power of the Web to connect people who would otherwise be isolated and in the dark. As a parent, it's enormously helpful to know our daughter's condition may be rare, but she's not alone, and that medical and parental knowledge and help out there. It's like stumbling around in a dark room, and finally, you've got light.

1

Client Served

Rating: 5

Chromosome Disorder Outreach is invaluable for families of children with Chromosome abnormalities. My son has a rare chromosome deletion (less than 20 in the world) and it was hard to find information or families that had similar issues to us. Chromosome Disorder Outreach passed on the names of 4 families that had a similar deletion. I was able to connect with them and discuss similarities and differences in our children. It is a lonely place when your child is unique, but Chromosome Disorder Outreach has made it seem a lot less lonely!

annewear

Client Served

Rating: 5

When my son was diagnosed with a rare disorder in 2009 I felt so much less alone when I connected with the Chromosome Disorder Outreach. I found some other families whose children had the same affliction and we were able to form a Facebook support group. Thanks CDO for all the great work you do!

Susan307

Volunteer

Rating: 5

When my grandson was born, we felt very alone. CDO has helped us know that others care, that others have been able to deal with what at first feels like unbearable news, and has given us the support to find our way. Such a gift!

Previous Stories

Volunteer

Rating: 5

When you're expecting your first grandchild, you never think about having problems. You only await with eagerness that first time you get to hold your son's child, to kiss those cheeks. When my daughter-in-law birthed my first grandson, he landed us with surprise after surprise that we definitely weren't ready for. From his cleft palate and lip, to his need to be whisked away to the ICU, to his months and months in the hospital, all the things that we thought NEVER would happen to our family happened.

We felt alone, confused, sad, terrified, and more... how could this be happening to us? CDO was there for us. There was information beyond what the doctors even knew. There were other parents who were a step or two ahead of us with advice and experience. There were explanations of some of the basic terms doctors were throwing around. There was a community of people who understood what we were going through.

No one could change the reality, nor would we now wish it to be other than it was, as this little boy is the joy of our lives. But we went from frightening aloneness to being held in a community of those who understood. I don't know what we would have done pre-internet, or pre-CDO.

Adam55

Client Served

Rating: 5

CDO helped us find other families with children that had the same disorder as ours. When there are only 19 children in the world that have been diagnosed with the same disorder, that is a blessing. Keep up the good work.

2 Julie223

Client Served

Rating: 5

We were at a total loss of direction when my grandson was recently diagnosed with 2 rather rare conditions. I found information, direction, and comfort in the advice and medical research information I received from them. Knowing I was not alone in this has made all of the difference in the world to my sanity!

Client Served

Rating: 5

My 2 week old son was diagnosed with a chromosome disorder a week ago. I didn't know where to go or what to do. I am so thankful I found CDO. They responded quickly and offered us invaluable connections to other families going through the same thing. This life preserver saved me from an otherwise very overwhelming and isolating experience.

General Member of the Public

Rating: 5

My three kids and I were diagnosed with a rare chromosome disorder and chromosome disorder outreach helped us get through a difficult time.