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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

60 Stories from Volunteers, Donors & Supporters

1 Delores J.

Board Member

Rating: 5

Hi,
My son, Darius is 24 years, born with chromosome abnormality deletion 13q. Darius is a fun and personable young man. He is vocal but his expressive language is compromised and limited. His receptive language is better. He is a handsome young man with beautiful blue eyes. Darius is graduating from a program called Career and Community Studies at the College of New Jersey, an academic and living independently program for young adults with developmental disabilities. If someone had told me ten years ago, your son will attend college and do well. I would have look at them as if they had two heads. My son has surpass my limited thinking. He has shown me that is very capable of living a productive life with support. Darius is graduating from college this May, and is working three days a week for three hours a day. He loves sports, and his goal is to work for an university sports team. I have been a member of the Chromosome Disorder Outreach since my son was 3 or 4 years old. It's a organization for us to share our story and experience raising our kids with a rare disorder. It has apprised me of resources and medical professionals to help better understand my son's disorder.

Client Served

Rating: 5

Chromosome Disorder Outreach has been a huge support and source of information for me since my son was born 12 years ago with Chromosome 8p Disorder. I am very grateful for this wonderful and much needed organization.

Previous Stories
1

Client Served

Rating: 5

Hello. Twelve years ago, my second son was born with a rare chromosome disorder and CDO helped get me through this very tough and confusing time. I still find solace and helpful information with the group even now. They are an invaluable non-profit that supports and aids families facing these rare illnesses. I highly recommend support for this wonderful, life-changing non-profit group to continue it's great work.

Read more

Client Served

Rating: 5

An amazing resource for families with kids w/ chromosome disorders. The best of the best

Client Served

Rating: 5

CDO has been so supportive and generous with their assistance and time during very difficult times.

Previous Stories

Client Served

Rating: 5

CDO helped me through a very difficult pregnancy in which doctors diagnosed the fetus I was carrying with a rare chromosome anomaly. I was frightened and confused until I received very helpful knowledge and guidance from CDO. My son is alive and thriving today, thanks in large part to CDO walking me through the challenging steps of becoming a parent. Heidi

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.

Client Served

Rating: 5

This is an exceptional organization to turn to when you receive a diagnosis of a rare genetic disease. Thank you so much for all you do!

My child was diagnosed at age 17 with mosaic partial trisomy 18. Very rare and not a lot of information on "mosaic" partial trisomy 18. This organization was the most helpful of all I contacted.

Previous Stories

Client Served

Rating: 5

This non-profit does exactly what it claims to do: non-profit organization providing support, information, education and advocacy to and for all those diagnosed with a rare chromosome disorder.

A genetic counselor recommended them and I am grateful she did!

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!