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.
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!
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.
Amazing, very informative, a must for anyone who has a loved one with a chromosome disorder! Thank you for all you do!!!
Excellent nonprofit! Linda has been very helpful with anything I have ever questioned.
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.
My son and 2 grandchildren were diagnosed with a rare chromosome deletion 2 years ago. This sent our world into chaos, trying to find any information to understand what this was about and what to expect. It was only at my insistence that my 6yo grandson was diagnosed, through a pediatrician, as he was showing definite signs of autism. We eventually got results of genetic testing in the mail and had to wait 8months for a genetic counselling.
It felt like the longest 8 months of my life, as I searched and searched for information.
Am so grateful to the chromosome disorder outreach for the information and support they provide to families in similar situations. I cried with relief when I came across the website, just to know there was others out there going through the same torment of feeling in the dark with very little support. Thank you for just being there! L.Robinson
CDO has helped me tremendously when I first learned of my child's diagnosis. Putting me in touch with other parents was invaluable to me.