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!
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.
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.
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.
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.
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!
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.