When our son was diagnosed with a rare chromosome disorder, finding any information was so difficult and daunting. I found CDO through a friend who’d told me about them and I’m so happy I did. I’ve learned so much more than I could possibly imagine, have made beautiful friendships by people we’ve connected through their Facebook group and will be forever thankful that there’s nonprofits like them that are able to help parents and families while they struggle to adapt to their changing lives with a chromo cutie.
When we were finally given the diagnosis before my daughter's birth of a rare chromosome abnormality, we immediately started searching the internet for information. This was the first information we found. Just knowing we we're not alone was a big support for us. It's great being able to read about other parents challenges, updates, and support. Thank you.
After my grandson's birth, we were sent to a major children's hospital to the geneticist. He was diagnosed with a rare X-linked chromosome abnormality. They gave me what little information that they had on it. During the course of the next year, I came upon Chromosome Disorder Outreach. I ask for information and they immediately sent me all they had on it along with parents of children with the same disorder. More importantly, I have connected with parents of other disorders who share their ideas, friendship and support. They do not charge for this at all. This infomation and support has been invaluable. LATER, my daughter and granddaughter was diagnosed with the same disorder. CDO also notifies us of any new research and findings. Thank you, CDO!
CDO provides great resources (Ask the doctor database, genetic/medical glossaries, news and chromosome specific information) and a way to connect those navigating chromosome disorders. I'm very happy I found this organization!
Hearing that your child has any disorder can be difficult, but when you hear that they don’t know what this means for your child can be scary. This agency s not only found information ha our doctors did not, but helped me find others with similar situations. Thankful we found them!
When my son was finally diagnosed back in the 90's this organization was pivotal in helping alleviate the fear of having a child with a rare Chromosome disorder. I am eternally grateful to the organizers and volunteers who do the work. This organization has helped an untold amount of families throughout the years.
Very helpful with my daughters chromosome disorder! The support from this online community is wonderful and let’s you know you’re not alone.
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.
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.
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.
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!
Great organization that has helped me feel less alone!!
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!!
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.
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.
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.
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!