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Chromosome Disorder Outreach, Inc.

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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

82 Stories from Volunteers, Donors & Supporters

Client Served

Rating: 5

Very helpful with my daughters chromosome disorder! The support from this online community is wonderful and let’s you know you’re not alone.

Kimberly G.3

General Member of the Public

Rating: 5

I reached out to this organization as my daughter was recently diagnosed with a deletion and duplication of the chromosome 20. Darlene was extremely helpful and fast at getting me information regarding my daughter's diagnosis. After contacting the geneticist working with the organization they were able to find a few cases in which were similar along with one that was very close to that of my daughter's. It helped a lot as my daughter's geneticist could not provide me this much information to look at. It made me feel less alone and have more resolve regarding her diagnosis. I appreciate them offering invaluable information to parents such as myself simply looking for answers.

Client Served

Rating: 5

I have just had the results of my 15 year old daughter's genetic testing come back last Monday. It was frustrating since she had genetic testing done as a toddler and it didn't come back with anything concrete until now. It is duplication of 8q12.1 - 8q21.12.
Pending our appointment with the pediatrician, he rang to give us some details about the results so I can study it before the appointment. I was expecting the research to take months, but once i stumbled into CDO, it was surprisingly quick. Within a day, I got a reply, some information and offer of help from a doctor to answer any question. All from a very caring lady.
Thank you so much for the help. I feel like my daughter and our family finally belong somewhere.

Board Member

Rating: 5

We recently discovered that our 15 year-old son has a deletion of his 10th chromosome. After searching the internet and coming up with nothing more than some medical case studies that were impossible to read, I stumbled upon the CDO. I filled out a form and in 24 hours, i was given knowledge and support from a wonderful group of parents whose children are going through similar issues.

kpaulson

Volunteer

Rating: 5

CDO was been a great resource to me when my son was first diagnosed and continues to be a great community that I try to support where I can!

Previous Stories

Volunteer

Rating: 5

When we received my son's diagnosis, the doctor said whatever you do, don't start googling his deletion. But of course I did and I'm so glad... I found CDO, people like me, people like my son, and a wonderful organization to volunteer for!

spneedsmom

Board Member

Rating: 5

Great organization that has helped me feel less alone!!

Previous Stories

Board Member

Rating: 5

14 years ago my son was born with an unbalanced translocation. Know one was able to tell me anything about life expectancy, quality of life, etc. The Drs. were stumped as well. Thankfully I came across CDO and they showed me that I wasn't alone. My child may not have the same chromosome disorder as the next member but we all work together to help people out. Awesome organization!!

Client Served

Rating: 5

Chromosome Disorder Outreach helped me to understand Regarding mutant genes that was found at my fetus (UPD3), direct me to a technique, whole exome sequencing (WES), which allows recognition of mutations in almost all protein-coding genes.
and provide with all relevant medical information about UPD3.
.

Christina124

Client Served

Rating: 5

This nonprofit has offered invaluable resources to a parent whose child was diagnosed with a very rare chromosome disorder. When even the doctors don't have information, Chromosome Disorder Outreach, Inc. did.

General Member of the Public

Rating: 5

Great support for my Grandson and his family. Information available. Super organization

Donor

Rating: 5

I am connected to the CDO through my nephew. This organization has helped my sister so much!

General Member of the Public

Rating: 5

I am the mother of a wonderful daughter who is the mother of a wonderful son who has a chromosome disorder. Chromosome Disorder Outreach has been an amazing support for my daughter and grandson - both emotional, practical and inspiring, as well as providing research and extensive information for their family.

Client Served

Rating: 5

CDO's slogan is "You Are Not Alone." When your child (or children in our case) are diagnosed with a rare chromosome disorder, it does feel like you're alone. Through CDO's network and database, we've been able to learn more about the disorder and connect with other families. CDO is a bright light, in a dark, scary situation. Keep up the good work!

Volunteer

Rating: 5

CDO has been a tremendous help to my family. We found CDO 17 years ago when our son was born. We were so confused and alone but CDO had and still does show that we are not alone.

Client Served

Rating: 5

CDO is an amazing group of people dedicated to helping complete strangers walk through the difficult and sometimes devastating world of genetic syndromes. This is a group of caring, knowledgeable, compassionate, and hard working volunteers. You can connect with someone on the other side of the keyboard day or night. You can e-mail them for journal articles related to your child's chromosome disorder, or with any type of question you may have and someone will get back to you within 24 hours, sometimes sooner. I have personally had questions answered by the geneticist on staff. He helped me unravel a difficult diagnosis for my daughter, and gave me the information that I necessary for me to speak with her hematologist and make a compelling case for further studies. If you or a loved one has a chromosome disorder, whether rare or not, CDO is a great place for information and a caring person to walk you through the tangled web of doctors, treatments, therapies, and information.

Client Served

Rating: 5

Thankful for this organization and the people I have connected with.

General Member of the Public

Rating: 4

My son, Darius is 26 years old with a Chromosome deletions 13q. I have been a member of Chromosome Disorder Outreach, Inc. since he was 3 years old.
The newsletter is a great source of information and connecting you with other families of children with rare chromosomal disorders. I have found geneticists who are familiar with my son specific deletion.

Client Served

Rating: 5

This group has given us the access to connect with other families that have children with similar chromosomal disorders. That connection has been invaluable to us.

Previous Stories

Client Served

Rating: 5

Such a great organization. They were able to pair us with another family with a child with similar diagnosis. That connection has been invaluable.

Client Served

Rating: 5

This nonprofit has helped me to meet other families who have children with chromosome disorders. I didn't know there were so many! We are not alone!

Volunteer

Rating: 5

My daughter has an extremely rare genetic disorder and through this nonprofit we managed to connect with about 10 children with the same rare chromosome disorder. We have been able to compare developmental progress, medical findings, solutions that have worked, and also compassion, support, useful tips and friendships. It's an amazing site that has changed our lives, broadened our knowledge, and brought parents together in ways no other organization has been able to.

Client Served

Rating: 5

Amazing, very informative, a must for anyone who has a loved one with a chromosome disorder! Thank you for all you do!!!