Chromosome Disorder Outreach, Inc.

Excellent organization that provides support to those with rare disorders. The geneticists and genetic counselors that assist CDO are amazing. They take the time to really research disorders and provide the latest information available. My daughter was diagnosed 29 years ago, and until we found CDO, no one could tell us much of anything. Thank you to everyone who has been a part of CDO to help us all feel less alone.

Great organization started by parents with the goal of helping other parents and families.

CDO has helped so many family get advice to questions that doctors and geneticists often can’t answer. For the past 34 years, connections have been made between family’s whose children share a rare disorder because of CDO. Being able to share unique experiences helps families not feel alone.

Great organization that offers up to date news on chromosome disorder issues. My daughter is a 3p baby and we are very happy to have the support of this organization.

Great organization.
Always helpful and friendly. So glad I found them.
Thanks for all that you do.
Ana Contreras

What if you lived half your life not knowing you had a rare chromosome disorder?
I did.
I wasn’t diagnosed with a rare chromosome disorder until I was 44 years old.
I was tested after my son was diagnosed. I was astonished to learn I unknowingly passed on a rare chromosome disorder to my child.
After the initial shock, we were introduced to genetic counseling and non-profit resources for information and support.
One of the resources was Chromosome Disorder Outreach (CDO). Finding this organization has been an important lifeline. This organization helped us go from feeling “alone” to feeling “connected” to others in the world sharing the same rare chromosome disorder. CDO provides families with the opportunity to connect and share with each other. It’s amazing to learn common medical conditions that can be associated with your specific rare chromosome disorder. Answers. Answers to questions about WHY we have certain medical condition’s. And also, what potential medical conditions to be aware of. Now as I’m aging and medical conditions develop, I find myself wondering if it’s related to my rare chromosome disorder or not. This is where being a member of CDO, connecting and sharing with other families is beneficial. The work that CDO does and the resources it provides impacted families is so important.
The words and feelings I described of “rare”, “lost”, “alone” are replaced with “relief”, “connections”, “answers” and “support” after finding this wonderful non-profit; Chromosome Disorder Outreach.
THANK YOU CDO for ALL that you do for us!

CDO not only sent us 16 articles about the rare chromosomal disorder that our son has but their Advisory Geneticist spent significant time answering our questions. CDO is truly outstanding!

I was one of the mom's many years ago to have created CDO.I'm thrilled to see it is bigger & better than I think any of us mom's could have imagined in 1989, 1990
I'm SO blessed to have been a part of it & I love what it has not only grew to be ,but the countless families it has helped!!!❤️

Chromosome Disorder Outreach, Inc. is fantastic!! We reached out to them during a very difficult time, probably the most stressful time our family has ever seen. We found out that our child carried a rare microdeletion that had some severe genetic abnormalities. The team there was so helpful and responsive. They didn't have exact answers or know about the exact issues we were seeing but they were able to help point us to the most accurate info available on the internet. We also made a donation and eventually was able to chat with a geneticist who gave us a professional opinion. We followed up with them several years later recently to thank them on the guidance as with their help, we were able to go through IVF and used the latest technology screen the genetic issue and have a healthy baby.

Our Alec is missing 5 million pieces of DNA. We have no one with his same deletion. His doctors were at a loss to help us. His geneticist was a disappointment and he failed to prepare us is for the journey. CDO was our lifeline. It connected us to other families struggling to make sense of their situation. It connected us to a geneticist who was willing to research and answer our questions. Doctors come and go. CDO has been the one constant in our journey.

Very helpful. Very friendly. Great information for those who are looking for help.

When my daughter's pediatrician told me that my daughter may have a syndrome, we were overwhelmed. We saw a neurologist who ordered tests, but we wouldn't get the results for 8 weeks. I couldn't wait, so I started doing research myself, narrowing down all the possible syndromes it could be based on her appearance and symptoms. The Chromosome Disorder Outreach website was so comprehensive and had way more information than I was able to find anywhere, and it was the most up-to-date compared to almost every other site I found. I was able to figure out that my daughter had Cri Du Chat Syndrome because of this organization, and by the time we got the results to confirm her diagnosis, we had already been able to start therapy because we found resources thanks to CDO. Thank you to this amazing nonprofit for making these resources available to all families and those in the medical field.

As the years go by, our special 4q guy has different issues from his early years. CDO is like a rock in our lives, the solid place we can go when we need information, stories from other families, or just some moral support. As we approach 16, there are still so many questions, puberty issues, still car seat issues, traveling issues. What would we do without CDO! Just gratitude.

I have missing chromosome 14 I love this group there are amazing everybody in it so friendly and lovable they make you feel like your family

My Child was diagnosed with xq28 Duplication a rare genetic disorder in 2018. My dad ended up finding cdo. It’s nice to have somewhere that’s doing research and serves people with disabilities.

I've been listening for years about my sister's involvement with CDO after learning her son had a chromosome disorder. CDO has really helped her to understand the disorder and find the support of other parents going through the same experience. I've learned from the CDO as well--so many great education materials on their website.

CDO is a tremendous, "one of a kind" resource for anyone who loves someone who has a chromosome disorder; or anyone who has a chromosome disorder. From access to medical information and research to the ability to network with others who are dealing with similar challenges; CDO fills a unique and much needed niche.

When my grandson was first diagnosed with a chromosome disorder I had no idea what this meant. Chromosome Disorder Outreach sent me loads of information on this rare diagnosis and eased my mind. Through emails they reached out to me and reassured me, laying the foundation for me on how to best raise him. He's now 18 and the highlight of my life. Thank you CDO for all you do for those of us who have loved ones with one of these disorders. Your work is greatly appreciated.

This was one of my first points of contact when I received the devastating news that my child had a rare chromosome disorder. No one could tell me that much about it. This wonderful place provided me with information that was better than what I got at the genetics counselor appointment I waited a year and half for. Thank you for helping us not feel so alone.

Great resource for all things chromosome disorder! My daughter was diagnosed with a Chromosome 19 deletion and I have found information, research, and even another family who has a similar disorder through CDO!

Having an almost 15 year old grandson with 4q deletion has been a complex journey, especially at the beginning when there were so many issues. CDO has been there for us (and for so many others) every step of the way, providing the latest research and even more importantly, moral support. What a gift to families with children with rare diseases.
Susan Olshuff, VT

My grandson Nathan was born with severe chromosome disorders. With the help and support of CDO his parents have found the way to keep him as healthy as possible. He celebrated his 21st birthday last May and we look forward to many more years. The challenges faced are much easier to navigate when shared. Thank you for being!

Hearing that your child has a rare genetic anomaly is devastating and terrifying. CDO offered reassurance and specific information to help me understand my daughters situation and let me know I wasn’t alone.

This organization has allow us to meet other families with kids like our beautiful daughter.

Without the Chromosome Disorder Organization we wouldn't know much about the multitude of Chromosome disorders out there affecting so many of our children and adults. My child has 17q12 microdeletion. There is not enough research or information out there. That's where the Chromosome Disorder Organization comes in. They research and work hard to get as much information as possible to help us and doctors with diagnosis.

We were able to find answers to questions that the family doctors could not provide. We were able to access other families who had similar kiddos and exchange tips and compassion. We ware able to access the latest research studies pertaining to our child's diagnosis. We can access these services now and get answers quickly without waiting 2-3 months to get into see a specialist.

My daughter has a very rare combination of missing chromosomes. According to the doctors she is the first on record, which has been a bit daunting and at time scary. CDO is a wonderful group that I know I can ask questions and get loads of support. On top of that, the Ask the Doctor function is AMAZING. To be able to ask specific questions about your kid. Woah. If you've had issues with doctors before this is the opposite. They're even bringing amazing virtual content to our community and interviewing authors with amazing stories. It may be a non-profit but it feels more like a community

Great support for families newly diagnosed and for those who received their diagnosis years ago. Friendly and helpful staff. Thank you!!

Always helpful with the latest information and research in the chromosome disorder community.

Amazing work from them. Been really really helpful can’t thank them enough thank you.

Every parent wants the world to be perfect for their child. It's scary when one learns that everything is not perfect and must accept and learn. CDO is there to help support you with information that makes all the difference. Give you hope and help you find others who are facing similar issues. There are so many variations and possible chromosome disorders. Education helps pave the way for future families. We are very fortunate to have CDO.

Me and myb2 daughters have all got the genetic disorder micrpduplication 16p11.2 it affected my youngest the most she has alot of hidden disabilities behavior problems speach n language learning disabilities n developmental delay n ADHD n autism really bad and very repetitive behaviour my older daughter has borderline personality disorder and autism im not showing any signs like they have

CDO is an amazing group that provides information and support to families whose children are diagnosed with chromosome disorders. There is little information and they help fill in any gaps of information.

CDO highly benefits families tasked with extraordinary medical diagnoses like my own through education, awareness and support. In loving memory of Samantha Lauren Martin, 1993 - 2006, Tetrasomy 18p Syndrome.

Excellent nonprofit company with compassionate leadership. Highly recommend!

CDO was amazing when me daughter received her rare diagnosis. Not only did they provide access to a geneticist to ask questions, but they also supplied us with contact details of other families with similar diagnoses. Reaching out to other families has been the only way we can find out more about our daughter's condition.
It is an absolutely crucial service that they provide.
We are in Australia and there is no charity or government service that does this. But location is not a boundary for CDO. So grateful.

CDO is a wonderful resource for new parents who have a child with a chromosome or other disorder and for parents who have older children who are needing support. For us, it has been comforting to read about others experiences in raising their children, to know we are not alone. CDO is a great networking organization and an important vehicle to raise awareness about Chromosome disorders

Exceedingly helpful information for individuals with quite rare genetic diseases and their parents. The ability to connect with other families from around the world to lend support and answer medical questions is invaluable.

so helpful!! CDO really helped me feel less alone when my daughter was diagnosed. networking with other parents was invaluable to me at that time when I felt so lost

Chromosome Disorder Outreach is the only place in the United Stares that helps you find your community, when your community is less than 10 other families affected by a disorder no one else has heard of. So grateful for this organization helping connect people who feel so isolated otherwise.

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.

They are such a wonderful connection to so many Rare families!

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!

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.

Great organization that has helped me feel less alone!!

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

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.

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

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.

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!!!

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

My daughter has mosaic Trisomy 18 and CDO provide great information and advice

Its hard for parents and or individuals that need resources to help a loved one, but with the help of CDO I had many usefull informative sites at my hand.

We found out a month ago that our baby has a rare genetic condition...one that doesn't even have a name! As soon as I found out, I started looking online for some sort of information and came across CDO. Even before I fully registered (which I've now done and gotten access to many other benefits), I read and cried through so many different pages on their site. The cover photo on their website says, "You are not alone," and that was exactly what I needed to hear. I am very thankful for how this organization has helped me just in the past few weeks and I anticipate it being a wonderful resource for us throughout our daughter's life.

CDO has been a place for me and my wife to learn more about our son's condition. We have also found out that we are not alone as we have learned the stories of other families. This website and nonprofit has been a great support community for us.

Great website that help medical geneticists provide information on rare chromosomal disorders to patients.

This is an excellent organization for information and connection to other families with rare chromosomal disorders. They were the first real information I found when my son was about 3-years-old and I was lost back then. This organization helped me greatly. He's now 21.
Cheryl Callahan

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.

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

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

An excellent organization that provides information and support to families and care givers of children with a variety of chromosome issues.

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.

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!

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!

CDO helped us find other families with children that had the same disorder as ours. When there are only 19 children in the world that have been diagnosed with the same disorder, that is a blessing. Keep up the good work.

We were at a total loss of direction when my grandson was recently diagnosed with 2 rather rare conditions. I found information, direction, and comfort in the advice and medical research information I received from them. Knowing I was not alone in this has made all of the difference in the world to my sanity!

My 2 week old son was diagnosed with a chromosome disorder a week ago. I didn't know where to go or what to do. I am so thankful I found CDO. They responded quickly and offered us invaluable connections to other families going through the same thing. This life preserver saved me from an otherwise very overwhelming and isolating experience.

My three kids and I were diagnosed with a rare chromosome disorder and chromosome disorder outreach helped us get through a difficult time.

CDO helped me find others like my daughter! Love!!

My son and I were not diagnosed with a micro duplication on 16p13.11 until he was 32. Until that time he had faced many physical, emotional and mental challenges but we never knew why. This site made us feel we were no longer alone. I am learning a great deal about how to assist my son and hope that some of our experiences will also help others. I am so grateful to now have support we both need.

When your child is diagnosed with a chromosomal abnormality, you feel completely confused and scared. This website allows you to connect with others who are experiencing what you are as well as find valuable information. It feels so great to know you are not alone.

My daughter is 1 of 22 in the world with her diagnosis, Tetrasomy 8p Mosaicism. I had no idea where to turn or who to talk to for support. Then I heard about The Chromosome Disorder Outreach and my expectations went up! The CDO gave me valuable resources to contact and those relationships I have now I owe entirely to the CDO's caring dedication to helping families living with rare disorders. I am always looking for ways to give back, but I know I will never be able to repay what the CDO has given my daughter and my family!

Our daughter is diagnosed with a condition in which their are no other known cases exactly like hers in the world. We felt alone for so long, until we discovered the CDO. While we still don't know cases exactly like our daughter's, we feel connected and we don't feel alone because we have this valuable organization. They have been so amazing. Just last week I had a genetics question that I didn't feel comfortable asking our primary doctor until I had more information. I emailed with CDO and had a detailed response from one of the geneticist in less than 24 hours. Talk about AMAZING. Completely eased my fears and gave me confidence going forward with speaking to my daughter' team.


We are so grateful for the CDO's efforts and would highly recommend them to any family we meet with a chromosome disorder. I wish we would have known about them 3 years ago when our daughter was first diagnosed! So thankful to know them now.

We LOVE CDO! Like most, we were given no information to help with our son's duplication & deletion. CDO has allowed me to connect with other families going through similar situations. It's really allowed me to not feel so lonely as a mom to a special needs kiddo. I have friends all over the world because of Chromosome Disorder Outreach. Thank you CDO!

When we first learned of my son's genetic deletion we were given almost no information. Through searching online I stumbled on CDO and they were instrumental in helping me understand what it all means and things to expect, as well as helping me to feel like we weren't alone. CDO is an amazing wealth of information and I am so blessed to be a member!

As my grandson has been diagnosed with a deletion CNV I was searching for information in the subject despite being a health care professional. I was so pleased to find a website offering such detailed, yet understandable, information.

I am a grandmother who has a 2 year old grandson diagnosed with chromosome 1 deletion disorder. This organization was very helpful to me and for that, I am truly grateful. Not too many people are familiar with these different disorders, and sometimes it was very hard for me to gather any helpful information. The Chromosome Disorder Outreach, Inc. did help me though. Everyone needs to know they are there for you.

I am so glad to be a part of CDO (Chromosome Disorder Outreach). Our daughter has 2 chromosome disorders that are very rare. We receive all kinds of information at this site and have met other with similar experiences. Thank you CDO!

Our granddaughter was born with a rare chromosomal disorder and we had so little information or support. We joined the CDO to get access to research data, other types of information, and support from other families. CDO has helped our family and we're grateful for their mission and support.

In the begin of our journey when the doctors could not provide us with any answers the Chromosome Disorder Outreach, Inc. provided us with ample information that would far exceed the answers to the questions we had.

As the research and diagnosing techniques advance, doctors are able to find rare genetic conditions to explain a set of symptoms and the questions that remain after the test results come back can be overwhelming. The doctors can't always translate the results into what life will look like in one's everyday life. The ability to connect with others and have access to research documents has been a priceless benefit to our family. When doctors couldn't give us answers, we turned to CDO and thankfully, we were able to get a better grasp on our son's two microdeletions. We can't thank these amazing people enough!

The CDO charity has really helped me to discover other kids with my son's very rare condition. I have also helped others that were diagnosed in utero with having a baby with this condition which gave me a strong sense of helping others.

I came to find out about CDO shortly after my son was diagnosed (in utero) with an 8p deletion. The support I got from the community and the list serv was top notch and really made me feel like I wasn't alone. Although I'm not always able to contribute in as many ways as I like (financially, time wise, spreading the word wise) I know I would not have survived that first couple years without this great group. Most people have no idea what it is like to have a truly unique child. CDO put me into contact with other parents and we were able to get an idea of what might be coming in the future. Each child is different but it helped us better prepare for what we might eventually encounter. This is a superb organization that does amazing work for a group of people that are pretty hidden. Because each disorder is so unique it's hard to achieve any sort of critical mass. CDO does that. Most highly and strongly recommended!

we found them by accident but so glad we did they helped us to understand our childrens disordee

I am the parent of a young child with a rare disorder and CDO has helped me "meet" other parents of children with this disorder to compare symptoms, discuss possible treatments and therapies, and--most importantly--provide a sympathetic and kindhearted listening ear when times get tough. This is an excellent organization and I highly recommend it to anyone dealing with a rare genetic disease.

I have been a member of CDO for 7 years. This organization offers so much when there is so little information out there. After our son's diagnosis we were left with little to no information about his rare duplication 18q12.3. CDO helped to make us realize we were not the only ones out there. This organization is a blessing!

My daughter has a chromosome disorder that only 3 others in the entire world have ever been known to have. This group helped me realize that we are not so rare in our struggles, and that people truly do care and help each other. I am grateful for their knowledge and eagerness to help.

CDO is such a caring organization. After my daughter was diagnosed with a 6q terminal deletion, I felt so alone. CDO helped me connect with other families around the country who had a child with similar deletions. Suddenly, it didn't feel so lonely, and, for the first time since my daughter was born, I felt hope.

Very caring and knowledgeable organization. Always gets back to you in a timely manner if they have to do more research for you

CDO has become a huge part of my life! I have two boys that were both born with a chromosome disorder. I never thought I would find other parents going through the same struggles as I have and to be able to share and relate with each other has been an amazing journey. My oldest son passed away Oct.22, 2013. He was 14 yrs. old. He was a true testament in living a life with a huge smile (reguardless of the disabilities) despite the pain he lived with everyday. He was and will always be my hero! He is listed on the CDO Angels page. Thanks CDO for helping and getting the word out for parents like me to be able to share our stories and in making new friendships and leting us know and feel that we are not alone.

CDO has helps families feel like they are not alone when faced with an extremely rare diagnoses. They have a few communities such as message boards and Facebook groups. They also have a listserve that can connect people to others who may have a child with a similar disorder.